Overview

The ACP 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 Syndrome (CIS), Transverse Myelitis (TM), Neuromyelitis Optica (NMO) or Devic's, Acute Disseminated Encephalomyelitis (ADEM), and Optic Neuritis (ON).

Biosamples and data are provided quickly and at minimal cost to researchers so talented scientists can devote their efforts to their novel research instead of the laborious process of sample collection. The Repository is an open-access resource, meaning that samples and data are available to all researchers regardless of institution or location. Our primary condition for using the biospecimens is that new results from these research studies must be returned to the Repository Database for the future benefit of all researchers.

Since the ACP Repository was started in 2006:

  • 10 leading MS clinics from across the U.S. have enrolled 3,200 study participants
  • We’ve provided biosamples and data for more than 100 research studies worldwide; these studies have contributed significantly to the understanding of MS and related diseases
  • Research using our biosamples has already generated one blood test that may help determine whether a person has MS

Learn more about how the ACP Repository is:

Collecting samples and data

ACP oversees the Repository and works with three vendors—SeraCare BioServices, Inc. (SeraCare), Document Solutions Group, Inc. (DSG) and Theorem Clinical Research—to store the samples, manage the data, and manage the collection sites, respectively.

Our collection sites were 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 identified potential study participants from their patient base and from within the local community, and any individuals who were interested were screened against the inclusion/exclusion criteria for the Repository.

Eligible patients who gave consent for participation came in to the site for a study visit where they had their blood drawn and participated in an interview to capture clinical and epidemiological data. The blood samples were sent to SeraCare for processing and storage and the interview data is stored at DSG. ACP 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 study participants were asked to refer any relatives who had 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) were asked to return at a later date for a new interview and additional sample collection. Those without a demyelinating disease (controls) were also asked to return periodically. By following study participants over time, we were able to ask additional interview questions, replenish previously collected samples, and obtain new types of samples.

Find out more about how to participate as a researcher.

Distributing samples and data to researchers

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 to determine how the work will further MS and related disease research and makes recommends regarding the application. When ACP 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.

Read summaries of the research studies that have been supported by the Repository.

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