One of the great unmet needs in child neurology is the ability to compare different neurological illnesses, and to develop “biomarkers” that assist in diagnosis, prognosis, or response to therapy. This need was highlighted by the experience of one family in particular, whose son suffered life-threatening inflammation of the brain from an uncertain cause. The inability to compare the immune responses of their child with those of other children with similar illnesses prompted a donation from the family to establish the Neuroscience Biorepository at Children’s Hospital of Philadelphia.
The Neuroscience Biorepository will serve as a high-level home for blood samples, tissue samples, and other types of biological materials partnered with a carefully constructed database of relevant clinical information. This initiative is designed to address the need for a broad neurological biorepository with a focus on pediatric disease, a feature that makes this repository unique.
Families will have the option of consenting to the anonymized system, wherein the collected samples can be studied without the ability to link back to the providing individual, or to consent more broadly to permit researchers to contact them in the future for more information.
In consultation with the CHOP Research Institute’s Center for Biomedical Informatics (CBMi), the Neuroscience Biorepository has designed, implemented, and launched a multifaceted and customizable database with our sample collection efforts.
This design allows for secure data management utilizing an electronic “honest broker” system coupled with a portal that ensures safe and secure access to participants’ electronic health records. This will permit both clinically obtained and research-specific subject data to be incorporated, updated, and directly linked to samples banked in the biorepository.
A REDCap interface is employed to allow validated and secure research while maintaining appropriate safeguards to protect health information, as any exported data can be shared in a de-identified manner with the recipient. The Biorepository utilizes a secure, institutionally approved, and fully staffed on-site laboratory and storage facility complete with multiple and redundant safety systems to ensure that banked samples are protected 24/7/365.
The facility is fully equipped to handle any and all banked samples with real-time tracking via Nautilus and 2-D barcodes for long-term accurate sample storage and retrieval. In addition to the state-of-the-art REMP Mid-Size StoreTM for storing DNA samples, the Biorepository has the ability to grow in tandem with our needs, in particular with genomic analyses.
Families have been uniformly supportive of our efforts to better understand neurological illnesses in children. This positive and enthusiastic community support has contributed to a robust start to our data and sample collection.