DEPARTMENT OF DEFENSE - CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS

Biorepositories – Postmortem Tissues

CDC National ALS Biorepository – Postmortem tissues include brain, spinal cord, bone, and muscle from 50 ALS patients who were enrolled in the CDC National ALS Registry. To request samples and data, visit the national ALS Biorepository Researcher Information page.

Department of Veteran Affairs Biorepository Brain Bank (VABBB) – Neurological tissue specimens from Veterans who died from ALS, and more recently has added enrollment of non-ALS Registry veterans. Phenotype data includes semi-annual ALSFRS-R/EX, with additional postmortem proxy interview, cognitive assessments, detailed health information from surveys and VA electronic medical records. Investigators are encouraged to discuss their requests with the VABBB before applying, by contacting Dr. Ian Robey at 520-792-1450 x4436 or Ian.Robey@va.gov.

Johns Hopkins ALS Postmortem Core (collaboration with the CDC National ALS Registry). Frozen and fixed CNS tissues, liver, and muscle samples from 120+ ALS/MND and non-neurological control autopsies, linked to de-identified clinical, demographic, neuropathological, genomic, and QC data. Whole Genome Sequencing (WGS) and bulk tissue RNA-Seq for multiple central nervous system (CNS) regions are also available from the NYGC ALS Consortium – linked to the tissue samples and slides. Email Dr. Lyle Ostrow - Lostrow1@jhmi.edu for more information and a sample request form.

Netherlands Brain Bank (NBB) –  The NBB contains >4,000 autopsies with a variety of neurological and psychiatric disorders, and non-demented controls. Also banks CSF, plasma, and sometimes spinal cord and dorsal root ganglia. There is online access to search the NBB database (requires registering for an account), and detailed information on the sample request and review process, including downloadable application forms.

NIH NeuroBioBank – Postmortem Brain Tissues collected by six biorepositories (University of Miami, University of Maryland, Harvard, the Human Brain and Spinal Fluid Resource Center, Mt. Sinai Brain Bank, University of Pittsburgh). Not specific for ALS, but contains ALS autopsies. Has an online inventory search website and detailed online instructions for obtaining tissues.

Target ALS Postmortem Tissue Core – Autopsies are performed at five academic ALS centers (Barrow Neurological Institute, Columbia University, Georgetown University, University of California San Diego, and Washington University St. Louis) according to harmonized SOPs for tissue dissection and clinical data collection. Whole Genome Sequencing (WGS) and bulk tissue RNA-Seq for multiple central nervous system (CNS) regions are available from the NYGC ALS Consortium. For any questions or to inquire about new or existing tissue requests, please email Marina Selenica at ms4739@georgetown.edu.

UK Brain Banks Network – Supplies tissue samples to academic and industry researchers in the UK and internationally from multiple participating brain banks. Not ALS specific, but includes motor neuron disease autopsies at many centers.