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TOPMed

Request Datasets

Note that a final accepted proposal will require two separate reviews:

  1. A scientific review of the paper by the Publications Committee (P&P).
  2. A review of data set selection by PIs of selected TOPMed studies.

Use this form to initiate review #2 by selecting data sets for a paper proposal that you have already submitted. Each data set has specific Data Use Limitations (DULs)--please read them carefully as you will be expected to follow the terms. Each selection will be reviewed by the appropriate PI(s) or designees, who will either approve or deny use of their data sets for this paper.

What datasets are shown below?

In this form, each data set corresponds to a single dbGaP consent group within one component study of TOPMed, and is indicated by a single check box.

The options below reflect consent groups from studies that have completed TOPMed dbGaP registrations. Please revisit this form as additional consent groups will be added as groups complete their TOPMed dbGaP registration. You can check the status for TOPMed studies online.

Need help choosing?

A list of abbreviations and definitions is provided below the table.

You may also find these summaries of PI guidance for which study-consent groups can be used for analyses in each working group domain helpful: Phase 1 and Phase 2. Please only request data sets from studies after communicating with the PI(s) about use of their study for your particular paper proposal.

Form instructions: Click the checkbox next to the desired data set(s), then click the "Request these data sets" button. In the next step, you will specify your proposal and agree to terms.

Request data sets
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-IRB-COL-NPU Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Requestor must provide a letter of collaboration with the primary study investigator(s). Use of the data is limited to not-for-profit organizations. phs001412 Nicholette Palmer, Donald W. Bowden
DS-DHD-IRB-COL-NPU Use of the data must be related to Diabetes and Heart Disease. Requestor must provide documentation of local IRB approval. Requestor must provide a letter of collaboration with the primary study investigator(s). Use of the data is limited to not-for-profit organizations. Use of the data is limited to Type 2 Diabetes and Cardiovascular Disease. phs001412 Nicholette Palmer, Donald W. Bowden
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
Please see phs001345 elsewhere on this form. Patricia Peyser, Jennifer Smith
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
Please see phs001218 elsewhere on this form. Rasika Mathias, Lisa Yanek
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
Please see MESA main study elsewhere on this form. Jerome Rotter, Kent D. Taylor
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
Please see phs001211 elsewhere on this form.
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-IRB-PUB-COL-NPU-MDS Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Requestor agrees to make results of studies using the data available to the larger scientific community. Requestor must provide a letter of collaboration with the primary study investigator(s). Use of the data is limited to not-for-profit organizations. Use of the data includes methods development research (e.g., development of software or algorithms). phs001543 Mortiz Sinner
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU-IRB Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. Use of the Cleveland Clinic AF Study data deposited in dbGaP is restricted to research on associations between phenotypes and genotypes. Cleveland Clinic AF Study data may not be used to investigate individual participant genotypes, individual identification, non-maternity/paternity, and of variables that could be considered as stigmatizing an individual or group. phs001189 Mina Chung, John Barnard
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU Use of the data is limited only by the terms of the model Data Use Certification. phs001434 David McManus
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU Use of the data is limited only by the terms of the model Data Use Certification. phs001546 Andrea Natale, Sanghamitra Mohanty
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-IRB-PUB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Requestor agrees to make results of studies using the data available to the larger scientific community. phs001601 Daniel Rader, Scott Damrauer
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU Use of the data is limited only by the terms of the model Data Use Certification. Use of the data includes methods development research (e.g., development of software or algorithms). Use of the data is restricted to research in adults over 18 years of age. phs001606 Tonu Esko
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
Please see phs000974 elsewhere on this form.
HMB-IRB-NPU-MDS Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Use of the data is limited to not-for-profit organizations. Use of the data includes methods development research (e.g., development of software or algorithms). Use of the Framingham data deposited in dbGaP is restricted to research on: genotype-phenotype associations; molecular phenotype (e.g., gene expression; microRNA)-phenotype associations; and proteomics/metabolomics-phenotype associations. All other phenotype-only analyses are prohibited (note: investigators may request data for such phenotype-only analyses through NHLBI's BioLINCC). Additionally, the Framingham data may not be used to: - Investigate individual pedigree structures or individual participant genotypes for the purpose of identifying individuals or families; or explore issues such as non-maternity or non-paternity. - Investigate topics that could be considered as stigmatizing an individual or group. - Assess outcomes that are not related to health or disease conditions (note: methodological research that will serve as a prelude to health or disease research is permitted). Data users are responsible for ensuring that all uses of the data are consistent with federal, state, and local laws and any relevant institutional policies, and that the data are always maintained in a secured fashion. Data users will be required to obtain IRB approval for their projects from their respective institutions (please note that only full or expedited approvals will be accepted). It is anticipated that, at least in some cases, the FHS data will be updated with additional information and will be so identified by an appropriate version number. phs000974 Nancy Heard-Costa, Ann Walsh
HMB-IRB-MDS Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Use of the data includes methods development research (e.g., development of software or algorithms). Use of the Framingham data deposited in dbGaP is restricted to research on: genotype-phenotype associations; molecular phenotype (e.g., gene expression; microRNA)-phenotype associations; and proteomics/metabolomics-phenotype associations. All other phenotype-only analyses are prohibited (note: investigators may request data for such phenotype-only analyses through NHLBI's BioLINCC). Additionally, the Framingham data may not be used to: - Investigate individual pedigree structures or individual participant genotypes for the purpose of identifying individuals or families; or explore issues such as non-maternity or non-paternity. - Investigate topics that could be considered as stigmatizing an individual or group. - Assess outcomes that are not related to health or disease conditions (note: methodological research that will serve as a prelude to health or disease research is permitted). Data users are responsible for ensuring that all uses of the data are consistent with federal, state, and local laws and any relevant institutional policies, and that the data are always maintained in a secured fashion. Data users will be required to obtain IRB approval for their projects from their respective institutions (please note that only full or expedited approvals will be accepted). It is anticipated that, at least in some cases, the FHS data will be updated with additional information and will be so identified by an appropriate version number. phs000974 Nancy Heard-Costa, Ann Walsh
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU Use of the data is limited only by the terms of the model Data Use Certification. phs001725 Michiel Rienstra
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-IRB-MDS Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Use of the data includes methods development research (e.g., development of software or algorithms). phs000993 Susan Heckbert, Nicholas Smith
DS-CVD-IRB-MDS Use of the data must be related to Cardiovascular Disease. Requestor must provide documentation of local IRB approval. Use of the data includes methods development research (e.g., development of software or algorithms). phs000993 Susan Heckbert, Nicholas Smith
Please see phs000993 elsewhere on this form.
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-MULTIPLE_DISEASES-MDS Use of the data must be related to Cardiovascular, metabolic disease and associated risk factors. Use of the data includes methods development research (e.g., development of software or algorithms). Use of the data must be for studies in adults 18 years or older. phs001545 Michael Cutler, Stacey Knight
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-NPU-MDS Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Use of the data is limited to not-for-profit organizations. Use of the data includes methods development research (e.g., development of software or algorithms). Use of the data must be for studies in adults 18 years and older. phs001544 Gustav Smith
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-AF-IRB-RD Use of the data must be related to Atrial Fibrillation and related disorders. Requestor must provide documentation of local IRB approval. Data use is limited to research related to atrial fibrillation and cardiovascular disease. phs001062 Patrick Ellinor, Steven Lubitz
HMB-IRB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Use of the MGH AF Study data deposited in dbGaP is restricted to research on associations between phenotypes and genotypes. MGH AF Study data may not be used to investigate individual participant genotypes, individual pedigree structures, perceptions of racial/ethnic identity, non-maternity/paternity, and of variables that could be considered as stigmatizing an individual or group. All research must be related to the etiology and prevention of morbidity and mortality of the U.S. population consistent with the demographic distribution in the MGH AF Study. Data users will be required to obtain IRB approval for their projects from their respective institutions (please note that only full or expedited approvals will be accepted). phs001062 Patrick Ellinor, Steven Lubitz
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-NPU-MDS Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Use of the data is limited to not-for-profit organizations. Use of the data includes methods development research (e.g., development of software or algorithms). phs001435 Diane Fatkin
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-NPU Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Use of the data is limited to not-for-profit organizations. phs001644 Ruth J.F. Loos, Michael Preuss
GRU Use of the data is limited only by the terms of the model Data Use Certification. phs001644 Ruth J.F. Loos, Michael Preuss
Please see phs001644 elsewhere on this form. Ruth J.F. Loos, Michael Preuss
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. phs001024 Patrick Ellinor, Steven Lubitz
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-CVD-IRB Use of the data must be related to Cardiovascular Disease. Requestor must provide documentation of local IRB approval. Please note that only full or expedited IRB approvals will be accepted. phs001600 Albert Sun, William Kraus
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-NPU Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Use of the data is limited to not-for-profit organizations. phs001547 Ingrid Elisabeth Christophersen
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-NPU-MDS Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Use of the data is limited to not-for-profit organizations. Use of the data includes methods development research (e.g., development of software or algorithms). phs001598
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-GSO Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Use of the data is limited to genetic studies only. phs001624 M. Benjamin Shoemaker, Dan Roden
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-ASC-RD-MDS Use of the data must be related to Arteriosclerosis and Related Diseases. Use of the data includes methods development research (e.g., development of software or algorithms). phs001933 Gregory Marcus, Clive Pullinger
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-IRB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. phs000997 M. Benjamin Shoemaker, Dan Roden
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU-IRB Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. phs001032 Dawood Darbar, Dan Roden
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Use of the Study data deposited in dbGaP is restricted to research on associations between phenotypes and genotypes. phs001040 Christine Albert, Daniel Chasman
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU-IRB-PUB-COL-NPU Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. Requestor agrees to make results of studies using the data available to the larger scientific community. Requestor must provide a letter of collaboration with the primary study investigator(s). Use of the data is limited to not-for-profit organizations. Please note that only full or expedited IRB approvals will be accepted. phs002194 Sarah Tishkoff, Scott Williams
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-IRB-MDS Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Use of the data includes methods development research (e.g., development of software or algorithms). Use of these data is limited to health/medical/biomedical purposes. The data can be used only for health related research, including research to improve methods for health related research. It is not permissible to use the genetic or relationship information to attempt to identify these individuals or to link these data to other databases (e.g., the Anabaptist Genealogy Database). These data may not be used for analyses whose primary purpose is to study population origins or ancestry or for the study of inbreeding, non-paternity rates, etc. without the express approval of the Amish study PI. phs000956 Braxton D. Mitchell
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-LD-IRB-COL Use of the data must be related to Lung Diseases. Requestor must provide documentation of local IRB approval. Requestor must provide a letter of collaboration with the primary study investigator(s). Use of the data must be related to Lung Diseases. Requestor must provide documentation of local IRB approval. Only full or expedited approvals will be accepted. Requestor must provide a letter of collaboration with the primary study investigator(s). phs001542 Jennifer Elhawary, Scott Huntsman
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
Please see phs000920 elsewhere on this form. Sandra Salazar, Scott Huntsman
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
Please see phs000921 elsewhere on this form. Scott Huntsman
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-ASTHMA-IRB-COL Use of the data must be related to Asthma. Requestor must provide documentation of local IRB approval. Requestor must provide a letter of collaboration with the primary study investigator(s). There is one consent group for this study: DS-ASTHMA-IRB-COL. Use of the data must be related to Asthma. Requestor must provide documentation of local IRB approval (please note only full or expedited approvals will be accepted). Requestor must provide a letter of collaboration with the primary study investigator(s). phs001728 Debra Stern, Fernando Martinez
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-ASTHMA-IRB-COL Use of the data must be related to Asthma. Requestor must provide documentation of local IRB approval. Requestor must provide a letter of collaboration with the primary study investigator(s). There is one consent group for this study: DS-ASTHMA-IRB-COL. Use of the data must be related to Asthma. Requestor must provide documentation of local IRB approval (please note only full or expedited approvals will be accepted). Requestor must provide a letter of collaboration with the primary study investigator(s). phs001729 Debra Stern, Fernando Martinez
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-ASTHMA-IRB-COL Use of the data must be related to Asthma. Requestor must provide documentation of local IRB approval. Requestor must provide a letter of collaboration with the primary study investigator(s). phs001730 Debra Stern, Fernando Martinez
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-ASTHMA-IRB-COL Use of the data must be related to Asthma. Requestor must provide documentation of local IRB approval. Requestor must provide a letter of collaboration with the primary study investigator(s). There is one consent group for this study: DS-ASTHMA-IRB-COL. Use of the data must be related to Asthma. Requestor must provide documentation of local IRB approval (please note only full or expedited approvals will be accepted). Requestor must provide a letter of collaboration with the primary study investigator(s). phs001732 Debra Stern, Fernando Martinez
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU Use of the data is limited only by the terms of the model Data Use Certification. phs001604 Frank Gilliland, Zhanghua Chen
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU Use of the data is limited only by the terms of the model Data Use Certification. phs001602 Frank Gilliland, Zhanghua Chen
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU Use of the data is limited only by the terms of the model Data Use Certification. phs001603 Frank Gilliland, Zhanghua Chen
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-ASTHMA-GSO Use of the data must be related to Asthma. Use of the data is limited to genetic studies only. phs001661 Hakon Hakonarson, Patrick Sleiman
GRU Use of the data is limited only by the terms of the model Data Use Certification. phs001661 Hakon Hakonarson, Patrick Sleiman
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-ASTHMA-IRB-COL Use of the data must be related to Asthma. Requestor must provide documentation of local IRB approval. Requestor must provide a letter of collaboration with the primary study investigator(s). Use of the data must be related to Asthma. Requestor must provide documentation of local IRB approval. Only full or expedited IRB are acceptable and this study requires IRB annual review. Requestor must provide a letter of collaboration with the primary study investigator(s). phs001605 Rajesh Kumar
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-ASTHMA-IRB-COL Use of the data must be related to Asthma. Requestor must provide documentation of local IRB approval. Requestor must provide a letter of collaboration with the primary study investigator(s). phs001727 Debra Stern, Fernando Martinez
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-COL Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide a letter of collaboration with the primary study investigator(s). phs001467 L. Keoki Williams
HMB-IRB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. phs001467 L. Keoki Williams
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU-IRB Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. phs001143 Kathleen Barnes, Michelle Daya
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-IRB-COL Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Requestor must provide a letter of collaboration with the primary study investigator(s). phs001599 Vijay G. Sankaran, L. A. Liggett
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-IRB-NPU Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Use of the data is limited to not-for-profit organizations. Data may not be used to investigate individual pedigree structures; individual participant genotypes; phenotype-only analyses; issues such as non-maternity and non-paternity; assess variables or proxies that could be considered stigmatizing to an individual or a group; or assess individual participant racial/ethnic identity. All research must be consistent with the CARDIA informed consent documents. All research must be related to the etiology and prevention of morbidity and mortality of the U.S. population consistent with the demographic distribution in the CARDIA Study. Data users are responsible for ensuring that all uses of the data are consistent with federal, state, and local laws and any relevant institutional policies, and that the data are always maintained in a secured fashion. Data users will be required to obtain IRB approval for their projects from their respective institutions (please note that only full or expedited approvals will be accepted). phs001612 Yinan Zheng
HMB-IRB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Data may not be used to investigate individual pedigree structures; individual participant genotypes; phenotype-only analyses; issues such as non-maternity and non-paternity; assess variables or proxies that could be considered stigmatizing to an individual or a group; or assess individual participant racial/ethnic identity. All research must be consistent with the CARDIA informed consent documents. All research must be related to the etiology and prevention of morbidity and mortality of the U.S. population consistent with the demographic distribution in the CARDIA Study. Data users are responsible for ensuring that all uses of the data are consistent with federal, state, and local laws and any relevant institutional policies, and that the data are always maintained in a secured fashion. Data users will be required to obtain IRB approval for their projects from their respective institutions (please note that only full or expedited approvals will be accepted). phs001612 Yinan Zheng
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-HLBS-IRB-NPU Use of the data must be related to Heart, Lung, Blood, and Sleep Disorders. Requestor must provide documentation of local IRB approval. Use of the data is limited to not-for-profit organizations. Data use is limited to academic researchers conducting research in heart, lung, blood and sleep disorders, and their risk factors, and does not include the study of population origins and ancestry. CFS data may not be used to investigate individual pedigree structures, individual participant genotypes, phenotype-only analyses or issues such as non-maternity and non-paternity. All researchers requesting CFS data will be required to obtain approval from their IRB for their proposed project using CFS data (please note only full or expedited approvals will be accepted). phs000954 Susan Redline, Brian Cade
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-MDS Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Use of the data includes methods development research (e.g., development of software or algorithms). phs001368 Bruce Psaty, Susan Heckbert
DS-CVD-NPU-MDS Use of the data must be related to Cardiovascular Disease. Use of the data is limited to not-for-profit organizations. Use of the data includes methods development research (e.g., development of software or algorithms). phs001368 Bruce Psaty, Susan Heckbert
DS-CVD-MDS Use of the data must be related to Cardiovascular Disease. Use of the data includes methods development research (e.g., development of software or algorithms). phs001368 Bruce Psaty, Susan Heckbert
HMB-NPU-MDS Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Use of the data is limited to not-for-profit organizations. Use of the data includes methods development research (e.g., development of software or algorithms). phs001368 Bruce Psaty, Susan Heckbert
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-CS-RD Use of the data must be related to COPD and Smoking and related disorders. phs000946 Michael Cho, Ed Silverman
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-CS-RD Use of the data must be related to COPD and Smoking and related disorders. Use of this data is limited to studies of COPD and other smoking-related disorders. The full list of diseases or conditions for which smoking is considered to be a risk factor can be found at: www.copdgene.org/smoking-related-disorders. The institutional certification assured that data submission was compliant with, and limited to, local and federal policies, and Massachusetts state law; To the extent possible, consideration was given to individuals and groups for subsequent data sharing and are reviewed by the National Institutes of Health's Data Access Committees. phs000951 Michael Cho, Ed Silverman
HMB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. phs000951 Michael Cho, Ed Silverman
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-AST-COPD Use of the data must be related to Asthma and Chronic Obstructive Pulmonary Disease. phs001726 Jessica Lasky Su, Scott Weiss
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-ASTHMA-IRB-MDS-RD Use of the data must be related to Asthma and related disorders. Requestor must provide documentation of local IRB approval. Use of the data includes methods development research (e.g., development of software or algorithms). Use of the data is limited to genetic studies of asthma and related conditions, such as pulmonary and allergic conditions, obesity/metabolic disorders, pre-natal conditions/outcomes. phs000988 Jessica Lasky Su, Scott Weiss
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
Please see phs001735 elsewhere on this form. Michael Wagner, James Cnota
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-CS-MDS-RD Use of the data must be related to Chronic Obstructive Pulmonary Disease and related disorders. Use of the data includes methods development research (e.g., development of software or algorithms). Use of this data is limited to studies of COPD and other smoking-related disorders. The full list of diseases or conditions for which smoking is considered to be a risk factor can be found at: www.copdgene.org/smoking-related-disorders. The institutional certification assured that data submission was compliant with, and limited to, local and federal policies, and Massachusetts state law; To the extent possible, consideration was given to individuals and groups for subsequent data sharing and are reviewed by the National Institutes of Health's Data Access Committees. phs001472 Michael Cho, Ed Silverman
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-CVD-IRB-NPU-MDS Use of the data must be related to Cardiovascular Disease. Requestor must provide documentation of local IRB approval. Use of the data is limited to not-for-profit organizations. Use of the data includes methods development research (e.g., development of software or algorithms). phs001218 Rasika Mathias, Lisa Yanek
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-HCR-IRB Use of the data must be related to High blood pressure and related cardiovascular-renal disease. Requestor must provide documentation of local IRB approval. Please note that only full or expedited IRB approvals will be accepted. phs001217 Tanika Kelly
GRU-IRB Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. phs001217 Tanika Kelly
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-CVD-IRB Use of the data must be related to Cardiovascular Disease. Requestor must provide documentation of local IRB approval. phs001359 Donna K Arnett, irvinr@uab.edu
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. phs001395 Tamar Sofer, Robert Kaplan
HMB-NPU Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Use of the data is limited to not-for-profit organizations. phs001395 Tamar Sofer, Robert Kaplan
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-H Use of the data must be related to Hemophilia. phs002302 Jill Johnsen, Deborah Brown
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-ASC-RF-NPU Use of the data must be related to Arteriosclerosis and its Risk Factors. Use of the data is limited to not-for-profit organizations. phs001345 Patricia Peyser, Jennifer Smith
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-CVD-IRB-RD Use of the data must be related to Cardiovascular Disease and related disorders. Requestor must provide documentation of local IRB approval. phs001293 Donna K Arnett, irvinr@uab.edu
GRU-IRB Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. phs001293 Donna K Arnett, irvinr@uab.edu
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-LD-IRB-NPU Use of the data must be related to Lung Disease. Requestor must provide documentation of local IRB approval. Use of the data is limited to not-for-profit organizations. phs001607 Jonathan Cardwell
DS-PUL-ILD-IRB-NPU Use of the data must be related to Pulmonary, Interstitial Lung Disease. Requestor must provide documentation of local IRB approval. Use of the data is limited to not-for-profit organizations. phs001607 Jonathan Cardwell
HMB-IRB-NPU Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Use of the data is limited to not-for-profit organizations. phs001607 Jonathan Cardwell
DS-ILD-IRB-NPU Use of the data must be related to Interstitial Lung Disease. Requestor must provide documentation of local IRB approval. Use of the data is limited to not-for-profit organizations. phs001607 Jonathan Cardwell
DS-PFIB-IRB-NPU Use of the data must be related to Pulmonary Fibrosis. Requestor must provide documentation of local IRB approval. Use of the data is limited to not-for-profit organizations. phs001607 Jonathan Cardwell
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-FDO-IRB Use of the data must be related to Focused Disease Only, limiting analysis to the study of blood pressure, heart or other cardiovascular disease, obesity, diabetes, kidney disease, or lung disease and risk factors for these diseases only. Requestor must provide documentation of local IRB approval. Jackson Heart Study (JHS) data may not be used to investigate individual pedigree structures or individual participant genotypes for the purpose of identifying individuals or families; assess variables or proxies that could be considered as stigmatizing an individual or a group; perform phenotype-only analyses (note: investigators may request data for such phenotype-only analyses through NHLBI's BioLINCC); or explore issues such as non-maternity and non-paternity. All research must be related to the etiology and prevention of morbidity and mortality of the U.S. Population consistent with the demographic distribution in Jackson Heart Study. Data users will be required to obtain IRB approval for their projects from their respective institutions (please note that only full or expedited approvals will be accepted). phs000964 Laura Raffield, Bertha Hidalgo
DS-FDO-IRB-NPU Use of the data must be related to Focused Disease Only, limiting analysis to the study of blood pressure, heart or other cardiovascular disease, obesity, diabetes, kidney disease, or lung disease and risk factors for these diseases only. Requestor must provide documentation of local IRB approval. Use of the data is limited to not-for-profit organizations. Jackson Heart Study (JHS) data may not be used to investigate individual pedigree structures or individual participant genotypes for the purpose of identifying individuals or families; assess variables or proxies that could be considered as stigmatizing an individual or a group; perform phenotype-only analyses (note: investigators may request data for such phenotype-only analyses through NHLBI's BioLINCC); or explore issues such as non-maternity and non-paternity. All research must be related to the etiology and prevention of morbidity and mortality of the U.S. Population consistent with the demographic distribution in Jackson Heart Study. Data users will be required to obtain IRB approval for their projects from their respective institutions (please note that only full or expedited approvals will be accepted). phs000964 Laura Raffield, Bertha Hidalgo
HMB-IRB-NPU Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Use of the data is limited to not-for-profit organizations. Jackson Heart Study (JHS) data may not be used to investigate individual pedigree structures or individual participant genotypes for the purpose of identifying individuals or families; assess variables or proxies that could be considered as stigmatizing an individual or a group; perform phenotype-only analyses (note: investigators may request data for such phenotype-only analyses through NHLBI's BioLINCC); or explore issues such as non-maternity and non-paternity. All research must be related to the etiology and prevention of morbidity and mortality of the U.S. Population consistent with the demographic distribution in Jackson Heart Study. Data users will be required to obtain IRB approval for their projects from their respective institutions (please note that only full or expedited approvals will be accepted). phs000964 Laura Raffield, Bertha Hidalgo
HMB-IRB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Jackson Heart Study (JHS) data may not be used to investigate individual pedigree structures or individual participant genotypes for the purpose of identifying individuals or families; assess variables or proxies that could be considered as stigmatizing an individual or a group; perform phenotype-only analyses (note: investigators may request data for such phenotype-only analyses through NHLBI's BioLINCC); or explore issues such as non-maternity and non-paternity. All research must be related to the etiology and prevention of morbidity and mortality of the U.S. Population consistent with the demographic distribution in Jackson Heart Study. Data users will be required to obtain IRB approval for their projects from their respective institutions (please note that only full or expedited approvals will be accepted). phs000964 Laura Raffield, Bertha Hidalgo
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-MDS Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Use of the data includes methods development research (e.g., development of software or algorithms). phs001662 Ed Silverman
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU-IRB Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. Please note that only full or expedited IRB approvals will be accepted. phs002360 Matthew Walter, Michael Otterstatter
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Data may not be used to investigate individual pedigree structures or individual participant genotypes for the purpose of identifying individuals or families; assess variables or proxies that could be considered as stigmatizing an individual or a group; perform phenotype-only analyses (note: investigators may request data for such phenotype-only analyses through the NHLBI’s BioLINCC); or explore issues such as non-maternity and non-paternity and perceptions of racial/ethnic identity. All research must be related to the etiology and prevention of morbidity and mortality of the U.S. Population consistent with the demographic distribution in MESA. phs001416 Stephen Rich, Jerome Rotter, Daune Thorington
HMB-NPU Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Use of the data is limited to not-for-profit organizations. Data may not be used to investigate individual pedigree structures or individual participant genotypes for the purpose of identifying individuals or families; assess variables or proxies that could be considered as stigmatizing an individual or a group; perform phenotype-only analyses (note: investigators may request data for such phenotype-only analyses through the NHLBI’s BioLINCC); or explore issues such as non-maternity and non-paternity and perceptions of racial/ethnic identity. All research must be related to the etiology and prevention of morbidity and mortality of the U.S. Population consistent with the demographic distribution in MESA. phs001416 Stephen Rich, Jerome Rotter, Daune Thorington
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-PUB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor agrees to make results of studies using the data available to the larger scientific community. phs001515 Barbara Konkle, Jill Johnsen
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU-IRB Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. Please note that only full or expedited IRB approvals will be accepted. phs002339 Nathan Blue
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-SCD-IRB-PUB-COL-MDS-RD Use of the data must be related to Sickle Cell Disease and related disorders. Requestor must provide documentation of local IRB approval. Requestor agrees to make results of studies using the data available to the larger scientific community. Requestor must provide a letter of collaboration with the primary study investigator(s). Use of the data includes methods development research (e.g., development of software or algorithms). phs001608 Allison Ashley-Koch, Marilyn Telen
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. phs001735 Michael Wagner, James Cnota
DS-CHD Use of the data must be related to Congenital Heart Disease. phs001735 Michael Wagner, James Cnota
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-LD-IRB-COL Use of the data must be related to Lung Diseases. Requestor must provide documentation of local IRB approval. Requestor must provide a letter of collaboration with the primary study investigator(s). There is one consent group for this study: DS-LD-IRB-COL. Use of the data must be related to Lung Diseases. Requestor must provide documentation of local IRB approval(please note that only full or expedited approvals will be accepted). Requestor must provide a letter of collaboration with the primary study investigator(s). phs000920 Jennifer Elhawary, Scott Huntsman
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-LD-IRB-COL Use of the data must be related to Lung Diseases. Requestor must provide documentation of local IRB approval. Requestor must provide a letter of collaboration with the primary study investigator(s). phs000921 Jennifer Elhawary, Scott Huntsman
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-SCD Use of the data must be related to Sickle Cell Disease. phs001466 Eric Boerwinkle, Vivien Sheehan
HMB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. phs001466 Eric Boerwinkle, Vivien Sheehan
DS-SCD-RD Use of the data must be related to Sickle Cell Disease and related disorders. phs001466 Eric Boerwinkle, Vivien Sheehan
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU Use of the data is limited only by the terms of the model Data Use Certification. Use of the data is limited only by the terms of the model Data Use Certification. phs001569 Danish Saleheen
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-SCD-IRB-PUB-COL Use of the data must be related to Sickle Cell Disease. Requestor must provide documentation of local IRB approval. Requestor agrees to make results of studies using the data available to the larger scientific community. Requestor must provide a letter of collaboration with the primary study investigator(s). phs001682 Sergei Nekhai, Angela Rock
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-PVD-IRB-COL-NPU Use of the data must be related to Pulmonary Vascular Disease. Requestor must provide documentation of local IRB approval. Requestor must provide a letter of collaboration with the primary study investigator(s). Use of the data is limited to not-for-profit organizations. Please note that only full or expedited IRB approvals will be accepted. phs002358 Micheala Aldred, Serpil Erzurum
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU-IRB Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. Only full or expedited approvals are acceptable, and an ANNUAL IRB review is required base on the informed consents from the submitting institution. phs002451 John Barnard, Serpil Erzurum
GRU-IRB-NPU Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. Use of the data is limited to not-for-profit organizations. Only full or expedited approvals are acceptable, and an ANNUAL IRB review is required base on the informed consents from the submitting institution. phs002451 John Barnard, Serpil Erzurum
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU-IRB-PUB-COL-NPU Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. Requestor agrees to make results of studies using the data available to the larger scientific community. Requestor must provide a letter of collaboration with the primary study investigator(s). Use of the data is limited to not-for-profit organizations. Use of the data includes methods development research (e.g., development of software or algorithms) Please note only full or expedited approvals will be accepted, and the determination of exempt or not human subjects research is inappropriate. phs001468 Shannon Kelly, Brian Custer
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-DHD-IRB-PUB-MDS-RD Use of the data must be related to Diabetes and Heart Disease and related disorders. Requestor must provide documentation of local IRB approval. Requestor agrees to make results of studies using the data available to the larger scientific community. Use of the data includes methods development research (e.g., development of software or algorithms). Use of the data is limited to genetic studies of the specified disease and related conditions, such as phenotypes relevant for aging. phs001215 John Blangero, Joanne Curran
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU-IRB-PUB-COL-NPU-GSO Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. Requestor agrees to make results of studies using the data available to the larger scientific community. Requestor must provide a letter of collaboration with the primary study investigator(s). Use of the data is limited to not-for-profit organizations. Use of the data is limited to genetic studies only. phs000972 Ryan L Minster
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-SAR-IRB Use of the data must be related to Sarcoidosis. Requestor must provide documentation of local IRB approval. Use of the data must be related to Sarcoidosis. Data users will be required to obtain IRB approval for their projects from their respective institutions (please note that only full or expedited approvals will be accepted). phs001207 Courtney Montgomery, Nathan Pezant
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU Use of the data is limited only by the terms of the model Data Use Certification. phs001446 Deborah A Meyers, Elizabeth Ampleford
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-IRB-NPU Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Use of the data is limited to not-for-profit organizations. Please note that only full or expedited IRB approvals will be accepted. phs002338 Carlos Bustamante, Joseph Wu
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-COPD Use of the data must be related to Chronic Obstructive Pulmonary Disease. phs001927 Deborah A Meyers
DS-COPD-NPU Use of the data must be related to Chronic Obstructive Pulmonary Disease. Use of the data is limited to not-for-profit organizations. phs001927 Deborah A Meyers
GRU Use of the data is limited only by the terms of the model Data Use Certification. phs001927 Deborah A Meyers
GRU-NPU Use of the data is limited only by the terms of the model Data Use Certification. Use of the data is limited to not-for-profit organizations. phs001927 Deborah A Meyers
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-CVD-IRB-COL-NPU-RD Use of the data must be related to Cardiovascular Disease and related disorders. Requestor must provide documentation of local IRB approval. Requestor must provide a letter of collaboration with the primary study investigator(s). Use of the data is limited to not-for-profit organizations. phs001387 Jerome Rotter, Yii-Der Ida Chen
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU-IRB Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. phs002038 Matthew Taylor
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
Please see phs001735 elsewhere on this form. Michael Wagner, James Cnota
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU-IRB-PUB Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. Requestor agrees to make results of studies using the data available to the larger scientific community. Use of the data is limited only by the terms of the model Data Use Certification. Requestor must provide documentation of local IRB approval. Only Full or Expedited IRB review are acceptable. Continued use of this dataset requires a Full or Expedited ANNUAL review by the IRB. Requestor agrees to make results of studies using the data available to the larger scientific community. phs002382 Jonathan Seidman, Christine Seidman
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-IRB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Use of the ARIC Study data deposited in dbGaP is restricted to research on associations between phenotypes and genotypes. ARIC data may not be used to investigate individual pedigree structures or individual participant genotypes for the purpose of identifying individuals or families; assess variables or proxies that could be considered as stigmatizing an individual or a group; perform phenotype-only analyses (note: investigators may request data for such phenotype-only analyses through NHLBI's BioLINCC); or explore issues such as non-maternity, non-paternity, and perceptions of racial/ethnic identity. Data users will be required to obtain IRB approval for their projects from their respective institutions (please note that only full or expedited approvals will be accepted). phs001211 Eric Boerwinkle, Alanna C Morrison
DS-CVD-IRB Use of the data must be related to Cardiovascular Disease. Requestor must provide documentation of local IRB approval. phs001211 Eric Boerwinkle, Alanna C Morrison
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
Please see phs001368 elsewhere on this form. Bruce Psaty, Susan Heckbert
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
GRU Use of the data is limited only by the terms of the model Data Use Certification. phs001402 Mariza de Andrade, Aneel Ashrani
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
DS-SCD-IRB-PUB-COL-NPU-MDS-RD Use of the data must be related to Sickle Cell Disease and related disorders. Requestor must provide documentation of local IRB approval. Requestor agrees to make results of studies using the data available to the larger scientific community. Requestor must provide a letter of collaboration with the primary study investigator(s). Use of the data is limited to not-for-profit organizations. Use of the data includes methods development research (e.g., development of software or algorithms). Use of the data is limited to genetic studies of sickle cell disease and related conditions such as blood pressure, blood flow, lungs, high blood pressure in the lungs. phs001514 Yingze Zhang, Victor Gordeuk
HMB-IRB-PUB-COL-NPU-MDS-GSO Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Requestor agrees to make results of studies using the data available to the larger scientific community. Requestor must provide a letter of collaboration with the primary study investigator(s). Use of the data is limited to not-for-profit organizations. Use of the data includes methods development research (e.g., development of software or algorithms). Use of the data is limited to genetic studies only. phs001514 Yingze Zhang, Victor Gordeuk
Consent Group Data Use Limitations TOPMed Accession # Data Set contact(s)
HMB-IRB Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. All requestors and data users must provide a local Institutional Review Board (IRB) letter from their respective institution approving conduct of the proposed research project. Only full or expedited approvals will be accepted. Use of the WHI data to conduct non-genetic research is prohibited. WHI data may not be used to investigate individual pedigree structures, individual participant genotypes, perceptions of racial/ethnic identity, variables that could be considered as stigmatizing an individual or group, or issues such as non-maternity. Users acknowledge that American Indian participants were self-identified and were primarily dwelling in urban areas and are not representative of the diverse American Indian population across the United States. Users agree not to use the data to infer tribal status or affiliation. phs001237 Charles Kooperberg, Alex Reiner
HMB-IRB-NPU Use of this data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry. Requestor must provide documentation of local IRB approval. Use of the data is limited to not-for-profit organizations. Use of the data is limited to not-for-profit organizations. All requestors and data users must provide a local Institutional Review Board (IRB) letter from their respective institution approving conduct of the proposed research project. Only full or expedited approvals will be accepted. Use of the WHI data to conduct non-genetic research is prohibited. WHI data may not be used to investigate individual pedigree structures, individual participant genotypes, perceptions of racial/ethnic identity, variables that could be considered as stigmatizing an individual or group, or issues such as non-maternity. Users acknowledge that American Indian participants were self-identified and were primarily dwelling in urban areas and are not representative of the diverse American Indian population across the United States. Users agree not to use the data to infer tribal status or affiliation. phs001237 Charles Kooperberg, Alex Reiner

Abbreviations and Definitions

Data Use Limitations

GRU

General Research Use: Use of the data is limited only by the terms of the Data Use Certification: these data will be added to the dbGaP Collection.

HMB

Health/Medical/Biomedical: Use of the data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry.

DS

Disease-Specific [list disease]: Use of the data must be related to the specified disease.

Reference:
NIH Standard Data Use Limitations

Data Use Limitation Modifiers

IRB

IRB approval required: Requestor must provide documentation of local IRB approval.

PUB

Publication required: Requestor agrees to make results of studies using the data available to the larger scientific community.

COL

Collaboration required: Requestor must provide a letter of collaboration with the primary study investigator(s).

NPU

Not-for-profit use only: Use of the data is limited to not-for-profit organizations.

MDS

Methods: Use of the data includes methods development research (e.g., development of software or algorithms).

GSO

Genetic studies only: Use of the data is limited to genetic studies only.

Disease Abbreviations

AF

Atrial Fibrillation

ASC-RF

Arteriosclerosis and its Risk Factors

CVD

Cardiovascular Disease

CS

COPD and Smoking

DHD

Diabetes and Heart Disease

HLBS

Heart, Lung, Blood, and Sleep disorders

LD

Lung Diseases

FDO

Focus Disease Only (in JHS, FDO=blood pressure, heart/CVD, obesity, diabetes, kidney disease, or lung disease and risk factors)

RD

Related Disorders

SAR

Sarcoidosis

SCD

Sickle Cell Disease

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