Research | Precision Link Biobank for Health Discovery

The PrecisionLink Biobank for Health Discovery at Boston Children’s Hospital gives patients and families an opportunity to participate in research at Boston Children’s and helps us build a valuable collection of samples and data that can advance knowledge of health and disease and improve the medical care we provide. The Biobank is an initiative of the Computational Health Informatics Program (CHIP).

The Biobank helps researchers understand how biological processes in blood, tissue, and cells can help diagnose, treat, and possibly prevent certain diseases and conditions. Participants voluntarily donate samples leftover from their medical care along with health information, which allows researchers to study a variety of diseases, conditions, and disorders.

The Biobank allows patients and their families to contribute directly to groundbreaking research. For example, Biobank contributors have already helped us discover the following:

• New factors that contribute to severe asthma
• Which environmental exposures may be contributing to rising autism prevalence
• Biomarkers that can help diagnose and evaluate patients with inflammatory bowel disease
• New biomarkers for traumatic brain injury outcomes
• How Trisomy 21 affects patients’ stature, growth, and bone development
• How immune cells help us fight infection
• How people grow and early ways to diagnose excessive weight gain in children

All Boston Children’s patients and their families can contribute to the Biobank. Participation is completely voluntary, and participants can withdraw at any time. There are no additional costs to you or your insurance company for participation.

You’ll be asked to take 5 minutes to review and sign a document saying you would like to be a participant.

We’ll ask your permission to:

• Collect and store samples that are no longer needed for your clinical care
• Allow researchers to study these samples along with information in your/your child’s medical record
• Optional: a voluntarily one-time sample of blood which can be added to the next clinical blood draw at Boston Children’s

All samples and health information are securely stored at Boston Children’s Hospital’s main campus. Samples are physically stored at in an access-restricted lab and all personal health information is stored in secured databases, behind our firewall. Samples and health information are only accessed by Boston Children’s researchers who’ve obtained approval from the Biobank Scientific Review Committee. These approved researchers use samples for a broad range of studies, including:

• Identifying biomarkers that predict clinical conditions
• Examining tissue under a microscope to better understand disease states
• Creating “cell lines” to model certain health conditions
• Studying genes associated with specific diseases

Many research teams at Boston Children’s have partnered with the PrecisionLink Biobank to streamline sample and data collection and study enrollment. This collaboration results in greater efficiency in advancing diagnostics, treatments, and cures for the conditions seen at Boston Children’s.

Some of our partner projects include:

• Genomic Information Commons (GIC)
• Biobank to Illuminate the Genomics of Kidney Disorders (BIGKiDs) with the Sampson Lab for Kidney Genomics
• Cardiovascular and Critical Care (CVCC) Biorepository with the Roberts Lab
• Pediatric Inflammatory Bowel Disease (IBD) Biospecimen Repository with the Snapper Lab
• Gastrointestinal-Omics (“GI-Omics”) Study of Bariatric Surgery In Adolescent Patients with the Stefater-Richards Lab
• Genetics of Early Childhood Obesity (GECO) with the Hirshhorn Lab
• Neonatal Intensive Care Unit (NICU) Biorepository with the Morton Lab
• Pulmonary Biobank Initiative with the Pulmonary Genetics Program
• Study of Brain Injury and Other Acute Neurologic Conditions “Neurorepository Initiative” (website in development)
• Children’s Rare Disease Cohort (CRDC) Initiative

A list of publications can be found here.