Funded by The ALS Association, NeuroBANK™ is the patient-centric platform for clinical research for numerous Association programs developed by the Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital. The platform received the Best Practices Award for Personalized & Translational Medicine at the 2018 Bio-IT World Conference and Expo in Boston earlier this month.
By providing the infrastructure and core services for clinical patient data that are shared with the international ALS community, NeuroBANK helps accelerate efforts across the research pipeline to discover future treatments for ALS.
“I couldn’t be more proud that our NeuroBANK platform has been awarded this Best Practice Award,” Alex Sherman, director of the Center for Innovation and Bioinformatics at NCRI, said. “NeuroBANK is changing the way researchers think about data, share data, and collaborate. The ALS world is coming together, teaming up against the disease by pooling its resources, collaborations, and data, all centered around NeuroBANK.”
The NeuroBANK platform allows ALS researchers to capture, share, and analyze observational data from research volunteers participating in multiple research studies, and link it to medical images, genetic information, tissue repositories, and patient-reported outcomes utilizing Neurological Global Unique Identifiers (NeuroGUIDs).
The data are de-identified and shared worldwide with clinicians, researchers, and industry, thus creating a collaborative environment at a level not previously available in ALS research. This approach may lead to better understanding of patient subtypes, clinical biomarkers of the disease and disease progression, and responses to therapy.
Importantly, NeuroBANK is integral for integrating information across the numerous large research projects and many other small projects supported by the Association, including the Center for Genomics of Neurodegenerative Disease at the New York Genome Center, Answer ALS, and Genomic Translation for ALS Care GTAC).
“The Bio-IT World award validates our funders’ vision and our efforts to create the single largest ALS clinical data and information pool, with eventually every bit of clinical information to be used and shared in research,” Sherman said. “NeuroBANK is all about collaboration and sharing. The fact that the NeuroBANK platform and the NCRI environment are CFR 21 Part 11-compliant ensures that accurate, clean, and attributable data are poised for regulatory submission when the time is right.”
For more information about NeuroBANK and the biorepositories funded by The ALS Association, click here.
If you have an ALS-related research project and would like to utilize the free NeuroBANK platform and core services, or have further questions, please contact the Core directly at: 855-ASK-NEURO, firstname.lastname@example.org or visit www.data4cures.org.
Link for more information:
Link to Key Elements to NeuroBANK: http://www.neurobank.org
Link for sample search:
(Need username and password; Data flowchart for more information)