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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
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%.
CFS Cleveland Family Study - WGS Collaboration phs000954 The Cleveland Family Study (CFS) was designed to examine the genetic basis of sleep apnea in 2,534 African-American and European-American individuals from 356 families. Index probands with confirmed sleep apnea were recruited from sleep centers in northern Ohio, supplemented with additional family members and neighborhood control families [{Redline1995}]. Four visits occurred between 1990 and 2006; in the first 3, data were collected in participants’ homes while the last occurred in a clinical research center (2000 - 2006). Measurements included sleep apnea monitoring, blood pressure, anthropometry, spirometry and other related phenotypes. Blood samples (overnight fasting, before bed and following an oral glucose tolerance test), nasal and oral ultrasound, and ECG were also obtained during the 4th exam. Institutional Review Board approval and signed informed consent was obtained for all participants. Cleveland Family Study was approved by the Institutional Review Board (IRB) of Case Western Reserve University and Mass General Brigham (formerly Partners HealthCare). Written informed consent was obtained from all participants.
ChildrensHS_GAP Children's Health Study: Integrative Genetic Approaches to Gene-Air Pollution Interactions in Asthma phs001602 The Integrative Genetic Approaches to Gene-Air Pollution Interactions in Asthma (GAP) study was proposed to use an innovative genetics approach in mice and humans to identify novel variants that interact with traffic-related pollutant exposures to affect lung function phenotypes and the risk of childhood asthma. The study participants were enrolled from the original southern California Children’s Health Study (CHS) with Institutional Review Board oversight and receipt of informed consent from all participants. In the TOPMed project, seven Hispanic White participants who did not have asthma history were included in the WGS analysis.
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