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.