NEALS has a repository of serum, plasma, cerebrospinal fluid (CSF), whole blood, extracted DNA, and urine samples from NEALS and NCRI research studies of amyotrophic lateral sclerosis (ALS) and motor neuron disease. Repository support has included funding from The ALS Association and Project ALS. Samples from this repository are available to researchers for the purpose of furthering the understanding of ALS or motor neuron disease and developing disease biomarkers.
To apply for samples, please visit the NEALS Sample Request Portal
The application requires a brief description and scientific justification for the use of the samples. The investigator can request samples from specific studies. A list of studies, sample processing, age ranges /gender of subjects and dates collected is provided with the application form. The NEALS Biofluid Repository Committee reviews and approves applications. Applications will be accepted at any time, but the committee meets bi-monthly to review applications. Applicants can expect a response from the committee within 7 days after a committee meeting. Priority will be given to members of NEALS and investigators from sites that have participated in the collection of samples. Investigators must provide IRB approval from their institution.
NEALS collects an administrative fee of $1,000 upon approval of an applicant’s request for samples. The administrative fee is waived for NEALS members and academic requests.
Invoices for the NEALS administrative fee will be sent at notification of application approval. Checks are made payable to The Northeast ALS Consortium and sent to:
NEALS Consortium
c/o Beverly Smits, Program Manager
200 Portland Street, 5th Floor
Boston, MA 02114
Non-academic requests will require a Material Transfer Agreement (MTA) with Massachusetts General Hospital and/or Barrow Neurologic Institute, where NEALS/NCRI/BNI samples are stored. Academic request will require a transfer letter. All investigators, including NEALS members, are required to cover any shipping costs associated with the sample request.
The per sample fee structure is listed below. Sample fees help offset ongoing costs for sample processing, storage and distribution and will be provided with the appropriate MTA from the institution shipping the samples (either Massachusetts General Hospital or Barrow Neurological Institute). Sample fees are waived for NEALS members and academic requests.
Sample Type | Cost per Vial | Volume |
Plasma or Serum | $75 | Up to 0.5 mL |
Plasma or Serum | $150 | Between 0.5 - 1.0 mL |
CSF | $150 | Up to 0.5 mL |
CSF | $300 | Between 0.5 - 1.0 mL |
Urine | $75 | Up to 1.0 mL |
Whole Blood | $75 | Up to 1.0 mL |
DNA | $200 |
(Fees are applicable for applications received on/following September 1, 2023.)
The Biorepository Committee is happy to provide letter(s) of support from the organization for grant applications. Please contact email hidden; JavaScript is required with your request for a letter of support at least one week prior to the grant due date. Please include the title of your project, the grant that you are applying for, and the grant's due date with your request. Please note that this letter does not guarantee samples to the applicant.
NEALS requires that all journal publications that result from the use of NEALS samples acknowledge the “NEALS Biofluid Repository” as their sample source. The committee also strongly encourages that researchers using NEALS samples contact the Sponsor/PI(s) who initially collected the samples and invite them to be co-authors/collaborators on the research. The NEALS Biofluid Repository Committee will supply study Sponsor/PI(s) information in the NEALS sample approval letter.
For additional questions about NEALS samples, please contact email hidden; JavaScript is required.
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
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.
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 individuals with ALS, non-ALS neuromuscular controls (disease controls), and healthy controls. Healthy controls are those individuals with no known neuromuscular disorders.
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.
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.
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.
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.
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.
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.
The investigator is responsible for those extractions if nucleic acids need to be extracted from a sample.
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.
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.