Precision Link Biobank for Health Discovery The Neurorepository Initiative

The Neurorepository Initiative at Boston Children’s Hospital collects and analyzes blood samples and specific health information from patients with acute neurological conditions over time to evaluate biomarkers in the blood.

The goal of the Neurorepository Initiative is to identify and investigate biomarkers in children with acute neurological conditions. Biomarkers are particles found in blood, bodily fluids, or tissue that are a sign of a condition or disease that can be used to assess the body’s response to specific treatments. The Neurorepository hopes that identifying these biomarkers and tracking any changes will provide valuable insights into the diagnosis, prevention, and treatment of acute neurological conditions.

The Neurorepository Initiative provides an opportunity for patients and their families to directly contribute to research about acute neurologic conditions that may lead to insights about how to improve upon existing diagnostic and treatment methods.

Participants in Neurorepository Initiative will also be enrolled into Boston Children’s Biobank, which will manage the specimens collected as part of our research. The goal of the Biobank is to collect samples and health information from patients and families to support use in future studies by Boston Children’s researchers and their collaborators, like the Neurorepository Initiative.

Boston Children’s patients who have been diagnosed with or are at risk for one of the following neurologic or similar conditions:

• Epilepsy and seizures
• Migraine and headache syndrome
• Head trauma and traumatic brain injury (TBI)
• Infectious and inflammatory diseases involving the brain
• VP shunts and shunt malfunctions
• Stroke and transient cerebral ischemic attacks (TIA)

If you decide to join the Neurorepository Initiative, you will be asked to sign a form stating the following:

• You permit us to collect up to five additional tubes of blood over the time you/your child participates in this project. These blood collections are performed by trained staff and will be collected only when you/your child is already having a clinical blood draw.
• You understand that blood collection amount will be determined in consultation with your or your child’s Boston Children’s care team and by their weight, height, current health status and condition. Blood collections will not exceed 5 mL.
• That you or your child would like to participate in both the Neurorepository and Biobank.
• You permit us to obtain your/your child’s health data and any specimen samples (blood, urine, etc.) that were collected for clinical care but are no longer needed for you/your child’s care.
• You understand that your samples and health information may be used to answer research questions at Boston Children’s Hospital beyond that of the Neurorepository.

There are NO additional costs to you or your insurance company for participation in this study. This is a completely voluntary study and your choice to participate or not will not affect the care that you receive at Boston Children’s Hospital.

Samples and health information are securely stored by the Biobank. Samples and health information databases are stored separately. Your/your child’s Medical Record Number (MRN), Date of Birth and the Name will be attached to samples; mainly for tracking purposes within the hospital and obtaining information from your/your child’s medical record. There is no limit to the length of time we will keep your/your child’s samples and data since the Biobank is intended to serve the Boston Children’s community for years.

The Neurorepository Initiative has partnered with the PrecisionLink Biobank for Health Discovery to conduct this study.

The Neurorepository team:

Rebekah Mannix, MD, MPH, is the Principal Investigator of the Neurorepository. Dr. Mannix is a senior associate physician in medicine in the Division of Emergency Medicine and specializes in head or brain injury and stroke.

Weston Northam, MD, is a collaborator with the Neurorepository and is an attending physician in the Department of Neurosurgery and co-director of the Cerebral Palsy and Spasticity Center. Dr. Northam specializes in cerebral palsy, Chiari malformation, hydrocephalus, spina bifida, and tethered spinal cord.

Jacinda Kalaher, BS, is the research coordinator of the Neurorepository.

Erin Borglund, MPH, is the research manager of the PrecisionLink Biobank for Health Discovery.

Florence Bourgeois, MD, MPH, is the scientific director of the PrecisionLink Biobank for Health Discovery and is a senior associate physician in medicine in the Division of Emergency Medicine.

Kenneth Mandl, MD, MPH, is the Principal Investigator of the PrecisionLink Biobank for Health Discovery and is the director of the Computational Health Informatics Program at Boston Children’s Hospital.

Enrolling

To participate or for more information, please contact:

• The Neurorepository Initiative Research Team at neurorepository@childrens.harvard.edu or 617-919-9902.
• Or join the Biobank Zoom office hours here from 8 a.m. to 4 p.m. on weekdays.