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Design and Implementation of a Prospective Adult Congenital Heart Disease Biobank
Alexander R Opotowsky1,2, Brittani Loukas3, Christina Ellervik4
1Department of Cardiology, Boston Children's Hospital, Boston, MA, USA alexander.opotowsky@cardio.chboston.org.
Insights
The Boston Adult Congenital Heart Disease Biobank collects and stores biospecimens for adults with complex heart conditions. This resource supports scientific biomarker investigation in adults with congenital heart disease (ACHD).
Area of Science:
- Cardiology
- Biomarker Research
- Biobanking
Background:
- Adults with congenital heart disease (ACHD) represent a growing and complex patient population.
- There is a need for sustainable resources for biomarker investigation in ACHD.
- The Boston Adult Congenital Heart Disease Biobank was established to address this need.
Purpose of the Study:
- To describe the protocol for collecting, processing, and storing biospecimens for ACHD.
- To establish a sustainable resource for scientific biomarker investigation in ACHD.
- To ensure flexible downstream use of biospecimens through diverse processing and storage methods.
Main Methods:
- Collected urine and blood samples from participants.
- Performed immediate clinical testing on a subset of samples.
- Processed and stored remaining biospecimens at -80°C as various aliquots (plasma, serum, etc.).
- Managed demographic, clinical, and biospecimen data using databases and a laboratory information management system.
Main Results:
- Enrolled over 650 unique participants (aged 18-80) since 2012.
- The Biobank contains over 11,000 biospecimen aliquots.
- Common diagnoses include Fontan procedure, repaired tetralogy of Fallot, and left-sided obstructive lesions.
Conclusions:
- The described protocols for biospecimen collection, handling, and storage are feasible.
- The Boston ACHD Biobank provides a valuable resource for biomarker research.
- Quality assurance measures were implemented throughout the process.
Background:
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.
Methods:
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.
Results:
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%).
Conclusions:
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.
