National ALS Biorepository Samples

In-home Sample Types
Participants (N =1,469)
DNA (2µg) 1,380
RNA (2µg) 1,157
Plasma (.5ml) 1,207
Serum (.5 ml) 1,200
Whole Blood – metals free (1.8 ml) 1,176
Red Blood Cells (1.0 ml) 1,206
Buffy Coat (1.0 ml) 230
PBMCs1 126
Urine (1.8 ml) 1,062
Urine with Hg preservative (4.5 ml) 687
Hair 157
Nails 268
Postmortem Sample Types
Participants (N=50)
Brain 50
Spinal Cord 49
CSF2 48
Bone 50
Muscle 50
Fibroblasts 28

1 PBMCs – Peripheral blood mononuclear cells

2 CSF – Cerebrospinal fluid

* Updated as of 04/30/2022

Johns Hopkins ALS Postmortem Core Inventory

Funded by National ALS Registry

Number of Autopsies with:
Fixed brain and brainstem regions 121
Fixed spinal cord regions 116
Fixed muscle 38*
Frozen brain and brainstem regions 119
Frozen spinal cord regions 113
Frozen CSF 43
Frozen muscle 42*

* multiple muscles are usually collected per autopsy, so the number of different individual muscles is considerably higher.

  • We collect frozen and fixed CNS tissues, liver, and muscle from ALS/MND and control autopsies.
  • Several hundred individual samples are frozen and fixed from each autopsy.
    • Goal is to produce the maximum number of individual, optimally sized tissue samples from each ALS-relevant region, while preserving the architecture of the tissue.
    • This minimizes subsequent freeze-thaw and labor that otherwise is necessary when re-dissecting frozen slabs or larger tissue regions.
  • Standard Operating Procedures for tissue dissection, processing, QC analysis, clinical data elements and neuropathological characterization are optimized specifically to meet the needs of ALS researchers.
  • Our 120+ autopsies includes 25 familial ALS decedents
    • 15 C9orf72 autopsies
    • FTD+ALS cases
    • Cases with mutations in SOD1, ALS4 (SETX), SBMA (AR), and others.
    • 15 Control autopsies

Contact the Core Director, Dr. Lyle Ostrow ( or the Core Manager, Dr. Kathleen Wilsbach ( for more information.