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Sample Repository Available to Researchers

 
NEALS and the Massachusetts General Hospital Neurological Clinical Research Institute (NCRI) have 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. The repository is partially funded by the ALS Association and 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.


ALS Biofluid Repository - Subject Numbers

Study Totals: 1st Plasma
6 mos
 
12 mos 18 mos CSF DNA Serum Whole Blood Urine
ALS 260(368) 115 61 27 84 (83) 40 75 (461) 32 177
Suspected ALS 46 30 15 9 19 15 17 - -
Disease Controls 115 (135**) - - - 43 (95**) 7 36 13 91
Healthy Controls 106 (227) - - - 45 (5) 11 56 (229) 10 117
Overall Totals: 527 (730) 145 76 36 191 (183) 73 184 (690) 55 385

* Parenthesis represent samples available from prior NCRI and NEALS research/clinical trials that varied slightly in processing methods
** Also includes neurological conditions (e.g. NPH, meningitis) other than neurodegenerative


Applications

Download the NEALS/NCRI Sample Application.
Download the descriptions of NEALS/NCRI samples.

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 Biofluid Repository Committee of the Northeast ALS Consortium reviews and approves applications. Applications will be accepted at any time, but the committee meets bi-monthly to review applications. The committee will meet to review applications on the following dates. Applicants can expect a response from the committee within 7 days after a committee meeting.      
  • Wednesday, October 2nd, 2013 11:30 am in-person meeting at the NEALS Annual Meeting        
Priority will be given to members of NEALS and investigators from sites that participated in the collection of samples. Investigators must provide IRB approval from their institution.

Applications may be submitted to:
mghneuroclinicaltrialsunit@partners.org (please cc: tlincoln@partners.org)

Administrative Processes and Fees

NEALS collects an administrative fee of $1,000 at the time of application submission to offset processing costs. If an application for samples is denied, 80% of the administrative fee will be returned. The administrative fee is waived for NEALS members. Checks may be made payable to: The Northeast ALS Consortium.

Non-academic requests will require a Material Transfer Agreement (MTA) with Massachusetts General Hospital, where NEALS/NCRI 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.

Grant Application Support

The Biorepository Committee is happy to provide letter(s) of support from the organization for grant applications. Please contact Tara Lincoln (tlincoln@partners.org) 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.

Research and Publications

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:

Tara Lincoln
NEALS Program Manager
617-724-7398  
tlincoln@partners.org
 
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