BACHBank

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Contact the Adult Congenital Heart Program


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:

  1. To validate the use of clinical biomarkers that have been studied in other patient populations
  2. To facilitate novel biomarker discovery
  3. To improve prospective clinical risk prediction
  4. To define pathophysiologic mechanisms of disease among diverse types of congenital heart disease

NUMBER OF ENROLLED PARTICIPANTS TO DATE

Enrolled participants through 3/27/2017: 1,068

Enrollment Graph BACH

Please contact us if you have questions about sample availability, collaboration, participation, or any other aspect of BACHBank

Address:

Alexander Opotowsky
Boston Children’s Hospital
Department of Cardiology, BACH Service, Farley 135.8
300 Longwood Avenue
Boston, MA 02115
Email: bachbank@cardio.chboston.org
Phone: 617-355-4347
e-Fax: 617-730-7540           

Who we are

Investigators

Alexander Opotowsky, MD MPH (Principal Investigator)
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

Research staff

Prince Owusu
Caroline Joyce
Catherine Gray

Scientific Advisory Board

Roger Breitbart (Boston Children’s Hospital)
Thomas Cappola (Hospital of the University of Pennsylvania)
Susan Cheng (Brigham and Women’s Hospital, Framingham heart Study)
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

Publications:

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 Association5(1), p.e002706.

Link: http://www.ncbi.nlm.nih.gov/pubmed/26755550

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.

Link: http://heart.bmj.com/content/early/2016/09/26/heartjnl-2016-309729.abstract

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 Surgery7(6), pp.734-743.

Link: http://pch.sagepub.com/content/7/6/734.short

Full text: http://pch.sagepub.com/content/7/6/734.full.pdf+html

Other useful links

The Adult Congenital Heart Disease Learning Center
http://achdlearningcenter.org/ 

International Society for Adult Congenital Heart Disease
http://www.isachd.org/ 

Clinical Chemistry journal
http://www.clinchem.org/

Adult Congenital Heart Association
https://www.achaheart.org/

Alliance for Adult Research in Congenital Cardiology
http://aarcc.net/

CONCOR: Dutch National Registry of Adult Patients with Congenital Heart Disease
http://www.concor.net/en/

The Toronto Heart Centre Biobank Registry
http://www.heartcentrebiobank.ca/home/index.php

The Bench to Bassinet Program and Congenital Heart Disease Genetic Network Study (CHD GENES)
https://benchtobassinet.com/
https://benchtobassinet.com/ForResearchers/CHDGENESStudy.aspx

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000 | 800-355-7944
For Referring Providers: 844-BCH-PEDS

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