NeuroBANK™ and Global Unique Patient Identifier Allow for Secure Collaboration, Data Aggregation and Sharing (S46.007)

Abstract

OBJECTIVE: Introduce standardized yet flexible approach to secure collaboration, integration, harmonization and sharing of clinical and research information. BACKGROUND: It is beneficial for medical and research community to aggregate and cross-link clinical and research information from clinical visits, clinical studies, health records, and self-reported patient outcomes, and to connect it to biospecimen and image repositories. Data duplication shall be avoided. Regulations prevent sharing protected health information (PHI). DESIGN/METHODS: The NIH-developed Global Unique ID (GUID) technology allows linking various data sources into coherent distributed meta-dataset, while maintaining regulatory compliance. A disease-area-specific central authority for generating GUIDs is set up by Neurological Clinical Research Institute to assist the neurodegenerative diseases clinical and research community with collecting patients’ data and linking it to other information. Advantages of GUID utilization are: • PHI does not leave the client computer; • Random-number-generated ID is not PHI-derived; • Centrally-generated GUIDs may be utilized in multiple applications and on various platforms; • Independently created datasets can be linked together; • A pseudo-GUID may be replaced with a real GUID when patient information becomes available, which is advantageous for legacy datasets integration; • GUIDs are unique yet untraceable back to the patient. RESULTS: NeuroBANK™ platform allows aggregation of existing datasets and direct data capture. Integration of the GUID technology with NeuroBANK™ provides mechanism of linking same-patients’ data from multiple sources. The GUID utilization is recommended for cross-linking data to biospecimen and image repositories. CONCLUSIONS: GUID technology is uniquely suitable for use with de-identified datasets. It may link biospecimen collections and images with clinical and research data and electronic health records. Clinicians and researchers are encouraged to us GUID platform, which will also facilitate international scientific collaboration. GUIDs may be utilized by international researchers and clinicians with or without their current affiliation with NeuroBANK™ and other collaboration efforts. Study Supported by: ALS Association

Disclosure: Dr. Sherman has nothing to disclose. Dr. Katsovskiy has nothing to disclose. Dr. Selsov has nothing to disclose. Dr. Sinani has nothing to disclose. Dr. Walker has nothing to disclose. Dr. Berry has received personal compensation for activities with Oakstone Publishing, the Muscular Dystrophy Association, and ALS Therapy Alliance. Dr. Katz has received personal compensation for activities with Blue Cross and Griffols. Dr. Katz has received research support from Cytokinetics. Dr. Cudkowicz has received personal compensation for activities with Trophos, GlaxoSmithKline Inc., Biogen Idec, and Teva Neuroscience. Dr. Cudkowicz has received research support from Biogen Idec, and Neuraltis.