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.

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Short Name	Title	TOPMed Accession #	Description	Ethics statement
BioVU_AF	The Vanderbilt University BioVU Atrial Fibrillation Genetics Study	phs001624
Boston-Brazil_SCD	Boston-Brazil Collaborative Study of Sickle Cell Disease	phs001599
CAMP	Childhood Asthma Management Program	phs001726		All CAMP study parents provided informed consent and participants provided consent/assent and the study was approved by the Institutional Review Boards of all 8 clinical sites (Denver, St. Louis, San Diego, Boston, Baltimore, Albaquerque, Toronto, Seattle) and the Data Coordinating Center (Baltimore).
CARDIA	Coronary Artery Risk Development in Young Adults	phs001612	The Coronary Artery Risk Development in Young Adults (CARDIA) Study is a study examining the development and determinants of clinical and subclinical cardiovascular disease and their risk factors. It began in 1985-6 with a group of 5115 black and white men and women aged 18-30 years. The participants were selected so that there would be approximately the same number of people in subgroups of race, gender, education (high school or less and more than high school) and age (18-24 and 25-30) in each of 4 centers: Birmingham, AL; Chicago, IL; Minneapolis, MN; and Oakland, CA. These same participants were asked to participate in follow-up examinations during 1987-1988 (Year 2), 1990-1991 (Year 5), 1992-1993 (Year 7), 1995-1996 (Year 10), 2000-2001 (Year 15), 2005-2006 (Year 20), 2010-2011 (Year 25), and 2015-2016 (Year 30). A majority of the group has been examined at each of the follow-up examinations (91%, 86%, 81%, 79%, 74%, 72%, 72%, and 71%, respectively). While the specific aims of each examination have varied, data have been collected on a variety of factors believed to be related to heart disease. These include conditions with clear links to heart disease such as blood pressure, cholesterol and other lipids, and glucose. Data have also been collected on physical measurements such as weight and body composition as well as lifestyle factors such as dietary and exercise patterns, substance use (tobacco and alcohol), behavioral and psychological variables, medical and family history, and other chemistries (e.g., insulin). In addition, subclinical atherosclerosis has been measured via echocardiography during Years 5, 10, 25, and 30, a chest CT scan during Years 15, 20, and 25, an abdominal CT scan during Year 25, and carotid ultrasound during Year 20. A brain MRI was performed on a subset of participants at Years 25 and 30. The CARDIA cohort, born between 1955 and 1968, has been influenced substantially by the obesity epidemic at ages younger than participants in other established NHLBI cohorts. Further investigation of the mechanisms linking obesity to derangements in cardiovascular structure and function and the etiology of clinical events promises to generate important new knowledge to inform health promotion and disease prevention efforts. see https://www.cardia.dopm.uab.edu/cardia-overview/overview-more	All CARDIA participants provided informed consent, and the study was approved by the Institutional Review Boards of the University of Alabama at Birmingham and the University of Texas Health Science Center at Houston.
CARE_BADGER	Childhood Asthma Research and Education Network: Best Add-on Therapy Giving Effective Responses	phs001728
CARE_CLIC	Childhood Asthma Research and Education Network: Characterizing the Response to a Leuikotriene Receptor Agonis and an Inhaled Corticosteroid	phs001729
CARE_PACT	Childhood Asthma Research and Education Network: Pediatric Asthma Controller Trial	phs001730
CARE_TREXA	Childhood Asthma Research and Education Network: Treating Children to Prevent Exacerbations of Asthma	phs001732
CATHGEN	The Duke CATHeterization GENetics Study	phs001600
CCAF	Cleveland Clinic Atrial Fibrillation Study	phs001189	Cleveland Clinic Lone Atrial Fibrillation GeneBank Study (CCAF) has enrolled patients with lone atrial fibrillation, defined as atrial fibrillation in the absence of significant structural heart disease. Participants were at least 18 years of age with a history of recurring or persistent lone atrial fibrillation, ≤50% coronary artery stenosis in the coronary arteries (if cardiac catheterization done) or with normal stress test results (documentation of normal cardiac catheterization or stress test required if age ≥50 years), and had normal left ventricular ejection fraction (LVEF) 50%. Individuals were excluded if they had heart failure, history of significant valvular disease (>2+ valvular regurgitation, any valvular stenosis), significant coronary artery disease (>50% coronary artery stenosis), prior myocardial infarction, prior percutaneous coronary intervention, or coronary artery bypass graft, or latest LVEF <50%.