Design and Implementation of a Prospective Adult Congenital Heart Disease Biobank.
Adults with congenital heart disease (ACHD) comprise a growing, increasingly complex population. The Boston Adult Congenital Heart Disease Biobank is a program for the collection and storage of biospecimens to provide a sustainable resource for scientific biomarker investigation in ACHD.



We describe a protocol to collect, process, and store biospecimens for ACHD or associated diagnoses developed based on existing literature and consultation with cardiovascular biomarker epidemiologists. The protocol involves collecting urine and ∼48.5 mL of blood. A subset of the blood and urine undergoes immediate clinically relevant testing. The remaining biospecimens are processed soon after collection and stored at -80°C as aliquots of ethylenediaminetetraacetic acid (EDTA) and lithium heparin plasma, serum, red cell and buffy coat pellet, and urine supernatant. Including tubes with diverse anticoagulant and clot accelerator contents will enable flexible downstream use. Demographic and clinical data are entered into a database; data on biospecimen collection, processing, and storage are managed by an enterprise laboratory information management system.



Since implementation in 2012, we have enrolled more than 650 unique participants (aged 18-80 years, 53.3% women); the Biobank contains over 11,000 biospecimen aliquots. The most common primary CHD diagnoses are single ventricle status-post Fontan procedure (18.8%), repaired tetralogy of Fallot with pulmonary stenosis or atresia (17.6%), and left-sided obstructive lesions (17.5%).



We describe the design and implementation of biospecimen collection, handling, and storage protocols with multiple levels of quality assurance. These protocols are feasible and reflect the size and goals of the Boston ACHD Biobank.
Department of Cardiology, Boston Children's Hospital, Boston, MA, USA alexander.opotowsky@cardio.chboston.org.|Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA.
Alexander R
AR
Opotowsky
Department of Cardiology, Boston Children's Hospital, Boston, MA, USA.
Brittani
B
Loukas
Department of Laboratory Medicine, Boston Children's Hospital, Boston, MA, USA.
Christina
C
Ellervik
Department of Cardiology, Boston Children's Hospital, Boston, MA, USA.
Lilamarie E
LE
Moko
Department of Cardiology, Boston Children's Hospital, Boston, MA, USA.|Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA.
Michael N
MN
Singh
Columbia University Medical Center, New York City, NY, USA.
Elizabeth I
EI
Landzberg
Departments of Nutrition and Epidemiology, Harvard T.H. Chan School of Public Health, Boston, MA, USA.|Channing Division of Network Medicine, Brigham and Women's Hospital, Boston, MA, USA.
Eric B
EB
Rimm
Department of Cardiology, Boston Children's Hospital, Boston, MA, USA.|Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA.
Michael J
MJ
Landzberg
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D018070:Biological Specimen Banks / Q000458:organization & administration*; D006348:Cardiac Surgical Procedures; D005260:Female; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000601:surgery*; D006801:Humans; D008297:Male; D008875:Middle Aged; D011446:Prospective Studies; D013048:Specimen Handling / Q000592:standards*; D055815:Young Adult
adult with congenital heart disease.; biobank; biomarkers; biospecimen; collection; congenital heart disease; organization and administration; processing; storage