Adults with congenital heart disease (ACHD) comprise a growing and increasingly complex population. These patients are living longer, healthier lives than ever before because of advances in surgical and medical care. Many, though, are still at increased risk for a variety of adverse events, both cardiovascular and otherwise.
The term “ACHD” encompasses dozens of diagnoses each with an array of possible treatments that have evolved dramatically over time. This diversity has posed a major challenge to systematic scientific investigation and understanding. Clinical care of ACHD, therefore, often requires consideration of data from related fields or extrapolation from fundamental physiologic principles.
BACHBank, an initiative started in 2012 at Boston Children’s and Brigham and Women’s Hospitals, has been created to address the need to gain a greater scientific understanding of each ACHD patient’s disease process. The Boston Adult Congenital Heart Disease Biobank collects and stores biospecimens to provide a sustainable resource for the scientific investigation of biomarkers in ACHD.
Our main goals are:
- to validate the use of clinical biomarkers that have been studied in other patient populations
- to facilitate novel biomarker discovery
- to improve prospective clinical risk prediction
- to define pathophysiologic mechanisms of disease among diverse types of congenital heart disease
NUMBER OF ENROLLED PARTICIPANTS TO DATE
Enrolled participants through 1/31/2020: 1,590
Please contact us if you have questions about sample availability, collaboration, participation, or any other aspect of BACHBank
Boston Children’s Hospital
Department of Cardiology, BACH Service
300 Longwood Avenue
Boston, MA 02115
Alexander (Sasha) Opotowsky
Cincinnati Children's Hospital
Who we are
- Michael Landzberg, MD
- Anne Marie Valente, MD
- Michael Singh, MD
- Mary Mullen, MD PhD
- Nancy Barker, PA-C
- Michelle Gurvitz, MD MS
- Caitlyn Joyce, PA-C
- Dorothy Pearson, PA-C
- Fred Wu, MD
- Keri Shafer, MD
- Amy Roberts, MD
- Sarah Brainard
- Catherine Gray
- Brittani Loukas
- Taylor Nordan
Scientific Advisory Board
- Roger Breitbart (Boston Children’s Hospital)
- Thomas Cappola (Hospital of the University of Pennsylvania)
- Susan Cheng (Cedars-Sinai Medical Center, Framingham Heart Study)
- Christopher R. deFilippi (Inova Heart and Vascular Institute)
- Kim Edgren (patient representative)
- Sitaram Emani (Boston Children’s Hospital)
- Tracy Livecchi (patient representative)
- David Morrow (Brigham and Women’s Hospital, TIMI)
- Nader Rifai (Boston Children’s Hospital, Laboratory Medicine)
- Eric Rimm (Harvard T.H. Chan School of Public Health)
- Gruschen Veldtman (Cincinnati Children’s Hospital)
Publications and projects
1. Opotowsky, A.R., Baraona, F., Owumi, J., Loukas, B., Singh, M.N., Valente, A.M., Wu, F., Cheng, S., Veldtman, G., Rimm, E.B. and Landzberg, M.J., 2016. Galectin‐3 Is Elevated and Associated With Adverse Outcomes in Patients With Single‐Ventricle Fontan Circulation. Journal of the American Heart Association, 5(1), p.e002706.
Full text: http://jaha.ahajournals.org/content/5/1/e002706.full
2. Opotowsky, A.R., Baraona, F.R., Mc Causland, F.R., Loukas, B., Landzberg, E., Landzberg, M.J., Sabbisetti, V. and Waikar, S.S., 2016. Estimated glomerular filtration rate and urine biomarkers in patients with single-ventricle Fontan circulation. Heart, pp.heartjnl-2016.
3. Opotowsky, A.R., Loukas, B., Ellervik, C., Moko, L.E., Singh, M.N., Landzberg, E.I., Rimm, E.B. and Landzberg, M.J., 2016. Design and Implementation of a Prospective Adult Congenital Heart Disease Biobank. World Journal for Pediatric and Congenital Heart Surgery, 7(6), pp.734-743.
Full text: http://pch.sagepub.com/content/7/6/734.full.pdf+html
4. Rajpal, S., Alshawabkeh, L., Almaddah, N., Joyce, C.M., Shafer, K., Gurvitz, M., Waikar, S.S., Mc Causland, F.R., Landzberg, M.J. and Opotowsky, A.R., 2018. Association of albuminuria with major adverse outcomes in adults with congenital heart disease: results from the Boston Adult Congenital Heart Biobank. JAMA Cardiology, 3(4), pp.308-316.
5. Opotowsky AR, Valente AM, Alshawabkeh L, Cheng S, Bradley A, Rimm EB, Landzberg MJ. Prospective cohort study of C-reactive protein as a predictor of clinical events in adults with congenital heart disease: results of the Boston adult congenital heart disease biobank. European Heart Journal. 2018 Jul 12;39(34):3253-61.
6. Alshawabkeh L, Rajpal S, Landzberg MJ, Emani S, Ephrem G, Gray C, Singh MN, Wu F, Opotowsky AR. Relationship of Red Cell Distribution Width to Adverse Outcomes in Adults With Congenital Heart Disease (from the Boston Adult Congenital Heart Biobank). The American Journal of Cardiology. 2018 Nov 1;122(9):1557-64.
7. Opotowsky, A.R., Carazo, M., Singh, M.N., Dimopoulos, K., Cardona-Estrada, D.A., Elantably, A., Waikar, S.S., Mc Causland, F.R., Veldtman, G., Grewal, J. Gray, C., Loukas B.N., and Rajpal S. 2019. Creatinine versus cystatin C to estimate glomerular filtration rate in adults with congenital heart disease: Results of the Boston Adult Congenital Heart Disease Biobank. American heart journal, 214, pp.142-155.
8. Carazo M., Kolodziej M., DeWitt E., Kasparian N., Newburger J., Duarte V., Singh M. and Opotowsky A. 28 April 2020. Prevalence and Prognostic Association of a Clinical Diagnosis of Depression in Adult Congenital Heart Disease: Results of the Boston Adult Congenital Heart Disease Biobank. Journal of the American Heart Association.
Other useful links
The Adult Congenital Heart Disease Learning Center
International Society for Adult Congenital Heart Disease
Clinical Chemistry journal
Adult Congenital Heart Association
Alliance for Adult Research in Congenital Cardiology
CONCOR: Dutch National Registry of Adult Patients with Congenital Heart Disease
The Toronto Heart Centre Biobank Registry
The Bench to Bassinet Program and Congenital Heart Disease Genetic Network Study (CHD GENES)