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.