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
AFLMU	Atrial Fibrillation Biobank Ludwig Maximilian University Study	phs001543
Africa6K	Integrative Genomic Studies of Heart and Blood Related Traits in Africans	phs002194		All NHLBI TOPMed: Integrative Genomic Studies of Heart and Blood Related Traits in Africans (Africa6K) participants provided informed consent, and the study was approved by the Institutional Review Board of the University of Pennsylvania, Case Western Reserve University, Vanderbilt University, Dartmouth College, and Regional Hospital, Sunyani.
Amish	Genetics of Cardiometabolic Health in the Amish	phs000956		All study protocols were approved by the institutional review board at the University of Maryland Baltimore. Informed consent was obtained from each study participant.
ARIC	Atherosclerosis Risk in Communities Study VTE cohort	phs001211
AustralianFamilialAF	Molecular Mechanisms of Inherited Cardiomyopathies and Arrhythmias in the Australian Familial AF Study	phs001435	The Australian Familial AF cohort is comprised of probands with a positive family history of atrial fibrillation. All subjects have provided informed written consent and have undergone medical history, ECG and echocardiogram, and blood or buccal samples collected for genetics analyses. Study protocols have been reviewed by the St Vincent's Hospital Human Research Ethics Committee.
BAGS	New Approaches for Empowering Studies of Asthma in Populations of African Descent - Barbados Asthma Genetics Study	phs001143		NIH guidelines for conducting human genetic research were followed. The Institutional Review Boards (IRB) of Johns Hopkins University (GRAAD, BASS and BAGS), Howard University (CRAD and HUFS), Wake Forest University (SARP), the University of California, San Francisco (coordinating center for the SAGE II and GALA II studies), the Western Institutional Review Board for the recruitment in Puerto Rico (GALA II Puerto Ricans), Children’s Hospital and Research Center Oakland and Kaiser Permanente-Vallejo Medical Center (SAGE II), the University of Chicago (CAG), University of the West Indies, Mona, Jamaica and Cave Hill Campus, Barbados (BAGS), University of Mississippi Medical Center (JHS), Henry Ford Health System (SAPPHIRE), the Universidad Católica de Honduras in San Pedro Sula (HONDAS), Federal University of Bahia (BIAS and ProAR), the University of Cartagena (PGCA), all reviewed and approved this study. All participants provided written informed consent.
BCC-PREG	The Boston-Colombia Collaborative for Adverse Pregnancy Outcomes
BioMe	Mount Sinai BioMe Biobank	phs001644	The BioMe Biobank is an ongoing, prospective, hospital- and outpatient- based population research program operated by The Charles Bronfman Institute for Personalized Medicine (IPM) at Mount Sinai. BioMe has enrolled over 50,000 participants between September 2007 and July 2019. BioMe is an Electronic Medical Record (EMR)-linked biobank that integrates research data and clinical care information for consented patients at The Mount Sinai Medical Center, which serves diverse local communities of upper Manhattan with broad health disparities. IPM BioMe populations include 25% of African American ancestry (AA), 36% of Hispanic Latino ancestry (HL), 30% of white European ancestry (EA), and 9% of other ancestry. The BioMe disease burden is reflective of health disparities in the local communities. BioMe operations are fully integrated in clinical care processes, including direct recruitment from clinical sites waiting areas and phlebotomy stations by dedicated BioMe recruiters independent of clinical care providers, prior to or following a clinician standard of care visit. Recruitment currently occurs at a broad spectrum of over 30 clinical care sites.	The BioMe cohort was approved by the Institutional Review Board at the Icahn School of Medicine at Mount Sinai. All BioMe participants provided written, informed consent for genomic data sharing.
BioVU_AF	The Vanderbilt University BioVU Atrial Fibrillation Genetics Study	phs001624
Boston-Brazil_SCD	Boston-Brazil Collaborative Study of Sickle Cell Disease	phs001599