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 begin an application, please click the green Register button in the upper right corner of the page
Applications
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.
Administrative Processes and Fees
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, NEALS Program Manager
200 Portland Street, Floor 5
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). Institutional indirect rates may also apply. Sample fees are waived for NEALS members and academic requests:
NEALS Biosample Fee Structure
| Sample Type | Cost per sample | 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.)
NEALS has partnered with SurveyMonkey Apply/FluidReview for the NEALS Sample Repository application portal. SurveyMonkey Apply/FluidReview is an online application system that helps organizations collect applications, manage subscriptions and facilitate reviews. The SurveyMonkey/FluidReview privacy statement applies to apply.surveymonkey.com/fluidreview.com (“SurveyMonkey Apply/FluidReview”). Further information regarding security, technical infrastructure, and security policies can be found in the SurveyMonkey Apply Security Statement. NEALS is not responsible for the content, privacy practices, data security, or use of any websites, such as the SurveyMonkey Apply website, that are not controlled by NEALS.
This page is made possible by a grant from Sanofi.