We are thrilled to announce that longitudinal biofluid samples from the ongoing ÃÛÌÒ´«Ã½ Natural History Study are now available for global distribution to scientists advancing ALS research. The Longitudinal Biofluid Consortium was launched in 2021 under the direction of Dr. Robert Bowser, CSO of Barrow Neurological Institute. This natural history study aims to generate and make available the most comprehensive collection of longitudinal biofluids samples and data in ALS to accelerate biomarker and treatment discovery.
Sample Request Process
Samples and corresponding clinical metadata can be requested by researchers worldwide through . The study collects cerebrospinal fluid (CSF), serum, plasma, and urine samples from participants with ALS and healthy participants. Metadata for these samples will be available through the ÃÛÌÒ´«Ã½ Data Portal in April 2024. Applications for biofluid samples will be evaluated on a monthly basis by the ÃÛÌÒ´«Ã½ Independent Review Committee (IRC) to ensure all requests are evaluated in a fair and transparent manner, consistent with ÃÛÌÒ´«Ã½ principles. Like all resources provided by ÃÛÌÒ´«Ã½, use of these samples will allow the recipient to fully own all rights to the data and intellectual property generated. There is no cost to request samples, but applicants are expected to cover shipping costs should their request be granted.
About the Study
The ÃÛÌÒ´«Ã½ Natural History study is conducted by the ÃÛÌÒ´«Ã½ Biofluid Consortium, which is currently expanding to include 18 US and International sites. Clinical research at each site is led by neurologists specialized in ALS and highly dedicated to improving healthcare and therapeutic development for all ALS patients. The study aims to recruit at least 800 participants with ALS and 200 healthy control participants from geographically, ethnically, and racially diverse populations. The study involves longitudinal collection of clinical and digital measures of motor, cognitive, speech, and respiratory function, in addition to biofluids including CSF, blood (plasma and serum) and urine. WGS data generation is on-going through our collaboration with the New York Genome Center, and additional multi-omic datasets and NfL analyses planned through our collaborations with the Broad Institute and University of Gothenburg.
ÃÛÌÒ´«Ã½ is coordinating with ALL-ALS, a larger consortium funded by the National Institutes of Health (NIH), that will enable any person living with ALS in the US to participate in this research study .
To learn more about the ÃÛÌÒ´«Ã½ natural history study, please click here.
To request samples, start your application .
