Information For Researchers

Our repository is a collection of samples and data from people with MS, CIS, or related demyelinating diseases (TM, ADEM, NMO, ON), their affected and unaffected relatives, and unrelated unaffected controls. The repository is a shared resource available to the research community investigating the causes of these diseases.

The repository is being created to accelerate research into the causes, sub-types, and biomarkers of MS and related demyelinating diseases. The research proposed by researchers requesting samples and/or data must conform to the informed consent.

Sample Types, Availability, And Pricing

Each participant in the repository contributes blood samples, from which we extract DNA, serum, and plasma. We also collect and store PAXgene tubes for supplying RNA. At this time, we are not collecting CSF or other types of fluids or tissues. If you need access to samples or subjects that we currently can't provide, please contact our VP of Scientific Operations. We may be able to obtain what you need through a prospective collection, or help you find an alternative source.

For the current participant count, including a breakdown of subject characteristics, please refer to our status page.

Please contact the Repository Director for additional details of specific samples available.

Data Availability

Investigators who request samples can request any of the information that is collected via our case report forms. This includes demographic and medical information contributed by all participants, as well as the results of diagnostic and monitoring tests for case subjects documented by the enrolling neurologists. Note that not all neurologists perform the same types of tests so not all of the clinical information is available on each of our case subjects.

Data available for a subject also includes experimental results contributed by any scientist who previously analyzed that subject's sample. Data sets returned to date include SNPs representing several genes associated with MS (e.g., HLA DRB1*1501, IL2RA, IL7R), other SNPs identified in whole genome association studies, and SNPs associated with Complex I and CCL genes. Our list of supported research studies can be found here and you can download a list of the data fields contained in each of the returned data sets here. Please contact our VP of Scientific Operations for more information about the availability of experimental results.

In addition to providing data to scientists receiving repository samples, we also welcome data-only requests by investigators interested in exploring questions that may be answered through analysis of our existing data.

Pricing

We have established a cost recovery schedule in order to support the availability and growth of the repository. Our pricing for samples and data is outlined here. All shipping costs are paid for by sample recipients.

Data Sharing

Recipients must agree to provide the per-sample data resulting from use of samples back to us for inclusion in the database. This data then becomes available for others receiving the samples and data from the repository. We allow a grace period for publication and the registration of intellectual property rights.

Applying For Access To Samples And Data

If you are interested in requesting samples and/or data from the repository, we ask that you submit a written proposal, describing the type and amount of samples needed, the planned research, details regarding the data which will be returned to the repository, status of IRB approval and funding, etc. We encourage you to request as many samples as you feel are necessary to produce a valid conclusion for your investigation.

This proposal will be reviewed by Accelerated Cure Project staff for completeness, alignment with the purpose of the repository, and our ability to fulfill the request. You will be notified of any issues and given the opportunity to submit changes.

After preliminary review, the proposal will be further reviewed by our Repository Oversight Committee who will make a recommendation on whether or not to grant your request. Factors which are weighed during this evaluation process include, for example:

• Potential benefit to people with MS and/or related demyelinating diseases
• Scientific merit of the proposal
• Adequacy of the plans for contributing data back to the repository

Oversight committee reviews occur on a bimonthly schedule; proposals are sent to committee members on the first business day of January, March, May, July, September, and November. We recommend that you send your proposal to Accelerated Cure Project two weeks or more before the next distribution date in order to be included in that review cycle.

Accelerated Cure Project will make a final decision on providing the samples and data to you. If we are unable to meet your needs, we will attempt to identify an alternate resource for you.

You can find additional details of the application process here.

Contacts For Researchers

Please contact our Repository Director with questions related to sample availability or data transfer.

Please contact our VP of Scientific Operations with questions related to the request review process.