It is said that one of the challenges facing researchers investigating diseases which affect how the nervous system – the brain, spinal cord and nerves, works is the difficulty collecting and accessing the relevant biological samples, such as blood, saliva, urine and spinal fluid, from participants.
These difficulties may arise due to cost – these samples are not cheap to collect, use, and store, and also due to difficulties recruiting enough participants with the disease of interest who are willing to participate in research.
In 2015, the National Institute of Neurological Disorders and Stroke (NINDS) released a funding announcement to support an independent Human Biospecimen and Data Repository for biomarkers research. Since then, this repository – called BioSEND, has been established, and continued to grow to “adapt to meet the changing needs of the research community”.
The primary function of the repository is to manage biospecimens for research studies of more than 25 different neurological diseases and disorders – importantly, this includes ME/CFS.
“The biorepositories receive, process, store, and distribute biospecimen resources that can be shared by the neuroscience research community”
Using BioSEND, researchers across the world can “store and access an extensive collection of biological materials collected from individuals with neurological diseases and disorders [including ME/CFS], as well as healthy control cohorts”.
Of note is also the NIH NeuroBioBank which was established in September 2013 as a national resource for investigators utilising human post-mortem brain tissue and related biospecimens for their research in order to understand conditions of the nervous system including ME/CFS – although in 2024 the number of cases with ME/CFS in the biobank was “quite small”, and the Netherlands Brain Bank for ME/CFS (NHB-ME/CFS) which aims to collect brain tissue and make them available to researchers worldwide.
