Repository Overview

The Accelerated Cure Project MS repository is a collection of biological samples and data from people with Multiple Sclerosis (MS) and other demyelinating diseases, their affected and unaffected relatives, and unaffected, unrelated matched controls. The demyelinating diseases represented are: MS and Clinically Isolated Syndromes (CIS), Transverse Myelitis (TM), Neuromyelitis Optica (NMO) or Devic's, Acute Disseminated Encephalomyelitis (ADEM), and Optic Neuritis (ON).

We are assembling the largest collection of samples and data from the described population available to date. Our eventual goal is to enroll 10,000 subjects, with a first phase to enroll 1,000 that is in progress now. (Click here to see our current enrollment status.)

We are currently collecting blood because it is readily accessible. Future plans include the addition of cerebrospinal fluid (CSF) and post-mortem brain and spinal cord tissue to the repository.

The purpose of the repository is to provide a much needed resource to the researchers studying the causes of MS and other demyelinating diseases. In the past, not all scientists have had access to significant collections of well qualified samples and data from affected subjects and controls. This has often hindered the execution of adequately sized studies. However, through development of this repository, scientists investigating many different aspects of MS will now have large numbers of samples available to use in their work.

Another important aspect of this repository is that the results from the distinct experiments performed on samples from this resource are being added into the repository database where they can be analyzed together. By analyzing results from multiple studies simultaneously, we hope to find combinations of factors that predispose to or protect against MS and other demyelinating diseases.

Collection of samples and data

Accelerated Cure Project for MS is sponsoring and overseeing the development of the repository. We are working with three vendors, SeraCare BioServices, Inc. (SeraCare), Document Solutions Group, Inc. (DSG) and Omnicare Clinical Research (OCR) to assist with sample storage, data management, and site management, respectively.

Our collection sites have been selected based on the patient population they serve, their geographic location and their willingness and ability to perform the study. Study personnel at each site identify potential subjects from their patient base, and any patients who are interested are screened against the inclusion/exclusion criteria.

Eligible patients who give consent for participation come in to the site for a study visit where they have their blood drawn and participate in an interview to capture clinical and epidemiological data. The blood samples are sent to SeraCare for processing and storage while the interview data is stored at DSG. We have implemented a system of unique barcodes to identify samples and data so that no personally identifying information can be linked to the samples or data.

Participating subjects are asked to refer any relatives who have one of the specified demyelinating diseases as well as one or two unaffected blood relatives or unrelated matched controls.

Our study is longitudinal, meaning that people with a demyelinating disease (cases) will be asked to return approximately annually for a new interview and additional sample collection. Those without a demyelinating disease (controls) may also be asked to return periodically. By following the subjects over time, we are able to ask additional interview questions, replenish previously collected samples, and obtain new types of samples.

Find out more about sample and data collection or how to participate as a subject or collection site.

Downloads of the interview questions and details of the samples collected are also available.

Distribution of samples

Researchers who wish to request samples and data from the repository submit an application describing their proposed research experiment and the samples and data required.

The repository oversight committee evaluates each application in relation to the goals of furthering research into the causes of these diseases. When the committee approves an application, samples and data are released to the researcher following signing of the materials transfer agreement. As a condition of receiving samples and data from the repository, the researcher agrees to submit the per-sample data resulting from the use of the samples for inclusion in the repository database.

Learn more about the sample distribution process or how to request samples. You can also read summaries of the research studies that we have supported so far.

Repository funding

We anticipate that creating and managing the initial 1,000 subject phase of the repository will take approximately 18 months and will cost $2.5 million. The Water Cove Charitable Foundation has pledged a $1 million matching fund in support of the repository, providing forty percent of the funding needed for the first phase of the program. To raise the remainder of the needed funds, we are leveraging this gift through a special matching program. The Water Cove Charitable Foundation will match all contributions of $1,000 or more, up to a total of $1 million.

The majority of the remaining funding for the repository will come from individual donors (families and individuals affected by these diseases), key corporate contributors, and grants.

Learn more about how you can make your own gift to fund the repository.