Abstract Details

Title Public-Private Collaboration in ALS Research by GUID Utilization Paves the Road to Patient-Centric Precision Research in Neurological Diseases

Topic General Neurology

Presentation(s) P4 - Poster Session 4 (8:00 AM-9:00 AM)

Poster/Presentation
Number 6-001

Objective To show the benefits of Neurological Global Unique Identifier (NeuroGUID™) and its derivative (NeuroSTAmP™) as a tool for creating a multimodal cross-registries dataset for precision research in neurological diseases.

Background

NeuroGUIDs have been utilized in academic, foundation, and industry sponsored neurological research for many years. The National ALS Registry created by the CDC (the “Registry”) was the first government-based resource utilizing the NeuroGUID server, thus generating 5,000+ NeuroGUIDs for its research participants who have completed over 31,500 surveys, on average 6.6 surveys per participant. We decided to analyze the availability of information for ALS patients in the Registry who may have participated in other ALS projects, including observational studies, clinical trials, and patient portals.

Design/Methods Utilizing NeuroGUID server’s API tools, discover availability of cross-sectional and longitudinal multimodal resources, such as clinical data, DNA files, bio- and image banks, omics, etc. for the Registry participants. Based on regulatory and legal constrains associated with each resource, provide merged datasets for sharing and analyses.

Results Information on 695 Registry volunteers with generated NeuroGUIDs is available in 14 research datasets, including observational and biomarker studies as well as clinical trials. Such outcomes as ALSFRS-r, vital signs, Forced/Slow Vital Capacity, ALS-CBS, Ashworth Spasticity were collected with 3,500+ ALSFRS-r, 3,000+ Vital Signs, and 2,800+ Vital Capacity longitudinal records. 300+ DNAs, thousands vials with biofluids, tens of images, and hundreds of omics files are available.

Conclusions The integration of data from various resources that utilize NeuroGUIDs offers increased sample size, multiple modalities and is synergistic and essential for practicing patient-centered precision research.

Authors/Disclosures
Alex Berger, BS PRESENTER	Mr. Berger has nothing to disclose.
	No disclosure on file
	No disclosure on file
Jaime Raymond	Jaime Raymond has nothing to disclose.
	No disclosure on file
	No disclosure on file
Paul Mehta	Paul Mehta has nothing to disclose.
Alexander Sherman (Massachusetts General Hospital)	The institution of Mr. Sherman has received research support from The ALS Association. The institution of Mr. Sherman has received research support from NIH. The institution of Mr. Sherman has received research support from FDA. The institution of Mr. Sherman has received research support from Biogen. The institution of Mr. Sherman has received research support from Amylyx Pharmaceuticals. The institution of Mr. Sherman has received research support from Mitsubishi-Tanabe Pharma America. Mr. Sherman has a non-compensated relationship as a Member, Board of Directors with ALD Connect that is relevant to AAN interests or activities.

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