TOPMed

Parent/Study Descriptions and Statements

Notes: “phs” is a dbGaP study accession number prefix indicating a phenotype study. A study accession number is a unique, stable, and versioned identifier.
For studies with no description in the table below, click on the phs number to see the summary provided on dbGaP. In the table, you may encounter phs links that redirect to a dbGaP error page. If so, this is because the TOPMed dbGaP study webpages do not go live until the study accession is released.

The table below provides the names of institutions providing ethics approval or oversight so TOPMed authors can respond to journals that require documentation for ethics review of studies involving human subjects.

Is your study missing a description? Contact the TOPMed ACC.

Short Name	Title	TOPMed Accession #	Description	Ethics statement
GOLDN	Genetics of Lipid Lowering Drugs and Diet Network	phs001359		All GOLDN participants provided informed consent, and the study was approved by the Institutional Review Board of the University of Kentucky.
HCHS_SOL	Hispanic Community Health Study - Study of Latinos	phs001395	The Hispanic Community Health Study/Study of Latinos (HCHS/SOL) is a prospective, population-based cohort study of 16,415 Hispanics/Latino adults (ages 18-74 years) who were selected using a two-stage probability sampling design from four US communities (Chicago, IL; Miami, FL; Bronx, NY; San Diego, CA) (PMID: 20609344; PMID: 20609343). During the enrollment phase, standardized clinical visits were conducted during 2008-2011 at dedicated study field centers by bilingual interviewers and medical technicians. Data collection followed a uniform protocol implemented in the four field centers, overseen by a Coordinating Center, Central Laboratory, and specialized Reading Centers.	This study was approved by the institutional review boards (IRBs) at each field center, where all participants gave written informed consent, and by the Non-Biomedical IRB at the University of North Carolina at Chapel Hill, to the HCHS/SOL Data Coordinating Center. All IRBs approving the study are: Non-Biomedical IRB at the University of North Carolina at Chapel Hill. Chapel Hill, NC; Einstein IRB at the Albert Einstein College of Medicine of Yeshiva University. Bronx, NY; IRB at Office for the Protection of Research Subjects (OPRS), University of Illinois at Chicago. Chicago, IL; Human Subject Research Office, University of Miami. Miami, FL; Institutional Review Board of San Diego State University. San Diego, CA.
HIPS	Hemophilia Inhibitor PUPs study	phs002302
HLKSCD	Genetic Variation of Heart, Lung, and Kidney Disease in Sickle Cell Disease: Pre- and Post-Curative Therapies
HVH	Heart and Vascular Health Study	phs000993	The Heart and Vascular Health (HVH) VTE Study is a case-control study of risk factors for cardiovascular outcomes set at Group Health (GH), an integrated health care delivery system in western Washington State. Cases include venous thromboembolism (VTE), myocardial infarction (MI), stroke, and atrial fibrillation (AF), with a shared common control group frequency matched to MI cases on age (within decade) sex, treated hypertension, and calendar year of identification. Study approval was granted by the human subjects committee at GH, and written informed consent was provided by all study participants. Eligibility and risk factor information were collected by trained medical record abstractors from a review of the GH medical record using only data available prior to the event date of cases and a randomly selected date for the controls. All VTE, MI, stroke and AF events were verified by medical record review. For the TOPMed data set, only incident idiopathic cases of VT and early-onset (age <=60 years) cases of AF without underlying heart failure, myocardial infarction, or valvular heart disease were included. Within the HVH study, VT and AF cases were diagnosed in both inpatient and outpatient settings. A venous blood sample was collected from all consenting subjects, and DNA was extracted from white blood cells using standard procedures.	Study approval was granted by the human subjects committee at Group Health, and written informed consent was provided by all study participants.
HVH VTE	Heart and Vascular Health Study	phs000993	The Heart and Vascular Health (HVH) VTE Study is a case-control study of risk factors for cardiovascular outcomes set at Group Health (GH), an integrated health care delivery system in western Washington State. Cases include venous thromboembolism (VTE), myocardial infarction (MI), stroke, and atrial fibrillation (AF), with a shared common control group frequency matched to MI cases on age (within decade) sex, treated hypertension, and calendar year of identification. Study approval was granted by the human subjects committee at GH, and written informed consent was provided by all study participants. Eligibility and risk factor information were collected by trained medical record abstractors from a review of the GH medical record using only data available prior to the event date of cases and a randomly selected date for the controls. All VTE, MI, stroke and AF events were verified by medical record review. For the TOPMed data set, only incident idiopathic cases of VT and early-onset (age <=60 years) cases of AF without underlying heart failure, myocardial infarction, or valvular heart disease were included. Within the HVH study, VT and AF cases were diagnosed in both inpatient and outpatient settings. A venous blood sample was collected from all consenting subjects, and DNA was extracted from white blood cells using standard procedures.	Study approval was granted by the human subjects committee at Group Health, and written informed consent was provided by all study participants.
HyperGEN	Hypertension Genetic Epidemiology Network	phs001293		All HyperGEN participants provided informed consent, and the study was approved by the Institutional Review Board of the University of Kentucky.
INSPIRE_AF	Intermountain Heart Study	phs001545		All INSPIRE_AF participants provided informed consent, and the study was approved by the Institutional Review Board of Intermountain Healthcare.
IPF	Whole Genome Sequencing in Familial and Sporadic Idiopathic Pulmonary Fibrosis	phs001607
JHS	Jackson Heart Study	phs000964		The JHS study was approved by Jackson State University, Tougaloo College, and the University of Mississippi Medical Center IRBs, and all participants provided written informed consent.