What are the addresses of the NEALS Biorepositories?
NCRI-MGH ALS Biorepository
Massachusetts General Hospital
165 Commonwealth Ave
Boston, MA 02067
NEALS Biorepository
Barrow Neurological Institute
350 West Thomas Road, Suite 600
Phoenix, AZ 85013
Does the NEALS Biorepository provide samples for exploratory studies?
Biofluids in the Biorepository are associated with clinical data and are not available for exploratory, non-hypothesis driven research. Requests for samples require justification for the analytes to be analyzed and evidence that the assay works with the samples requested.
A limited pool of samples with little or no clinical data may be available for investigators to generate pilot data for potentially larger studies.
Does the NEALS Biorepository provide samples for validation of assays?
Yes. However, the NEALS Biorepository may not have enough samples to meet the full need. If investigators will request samples from several biorepositories to obtain the required sample numbers, the proposal must list the other biorepositories. Copies of letters of potential support from those biorepositories are strongly recommended to be submitted with your sample request.
Biofluids are available from which participant populations?
Biofluids are available from individuals with ALS, non-ALS neuromuscular controls (disease controls), and healthy controls. Healthy controls are those individuals with no known neuromuscular disorders.
What are the definitions used to differentiate fALS and sALS cohorts?
fALS: Individuals with ALS associated with a known ALS-related genetic mutation or those who have an immediate family member (parent, sibling, or child) with ALS
sALS: Individuals with ALS with no known ALS-related genetic mutation and no known immediate family member with ALS. This cohort includes individuals who have no record of genetic testing.
Is the genetic information available for samples from the Biorepository?
Most samples are associated with little or no genetic data. Most samples were collected before the standardization of genetic testing as part of study participation or clinical care.
What kind of biofluids are available from the NEALS Biorepository?
The NEALS Biorepositories store plasma, serum, cerebral spinal fluid, whole blood, and urine. Some DNA samples are available.
CSF is limited within the repository, especially for disease and healthy controls.
What is the size of the biofluid aliquots available from the NEALS Biorepository?
Most aliquots are approximately 0.25mL, 0.5ml, or 1.0mL. Volumes may not be exact.
Some samples donated to the NEALS Biorepository may have aliquots in smaller volumes.
The NEALS Biorepository does not thaw samples for re-aliquoting prior to distribution.
What is the freeze/thaw history of the biofluids?
Most biofluids in the NEALS Biorepository were collected explicitly for future research, frozen at the time of collection, and stored below ‑70oC. All biofluids are shipped on dry ice to and from the Biorepository.
The NEALS Biorepository does store biofluids donated from studies in which the samples underwent freezer/thaw cycles for trial purposes. Freeze/thaw cycle information is available for those samples.
What is the average age of the biofluids stored in the NEALS Biorepository?
The average age of the samples stored in the NEALS Biorepository is over 5 years. Some samples have been stored for up to 25 years.
If I need DNA or RNA, does the Biorepository isolate RNA or DNA, or do I?
The investigator is responsible for those extractions if nucleic acids need to be extracted from a sample.
When I finish analyzing the samples for the approved study, will I return the residuals to the biorepository?
If an investigator is extracting DNA from a sample, return of any residual DNA may be requested to be returned to the Biorepository. This will be stated in the project's NEALS approval letter and/or MTA.
Residuals of any other sample type distributed from the Biorepository are not to be returned.
After I have completed the approved study, may I use the residuals for additional projects?
Use of the samples provided by the NEALS Biorepository is limited to the approved project. If the researcher wants to expand their analysis or use the residuals in a new project, a new
Sample Request must be submitted and approved via the NEALS Sample Request Portal. If approved, the investigator is required to meet the same requirements as the original proposal, including proof of funding, applicable Material Transfer Agreements (MTAs) with the NEALS Biorepository that initially provided the resources, and the approval/exemption letter from their IRB or Ethics Board of Record.