We are currently enrolling study participants at collection sites across the United States and are seeking individuals with Multiple Sclerosis (MS), Clinically Isolated Syndromes (CIS), Transverse Myelitis (TM), Neuromyelitis Optica (NMO) or Devic's, Acute Disseminated Encephalomyelitis (ADEM), and Optic Neuritis (ON).
Individuals with MS, CIS, TM, NMO, ADEM or ON who meet the inclusion/exclusion criteria are eligible to participate. In addition, we ask enrolled study participants to refer their affected and unaffected blood relatives and certain unaffected non-relatives to the study.
By enrolling as a study participant in the Repository, you are participating in the creation of a critical resource for scientists who are seeking to understand the causes of and ultimately cure MS and other demyelinating diseases. The Repository enables large-scale studies by providing researchers access to samples from thousands of people. In addition, because the population of samples will be relevant to a variety of research disciplines, "virtual" cross-disciplinary research can be accomplished by analyzing the results of multiple experiments on the same set of samples.
Step 1: Reaching out
If you live near or plan to visit the region of one of the enrolling sites, contact the study coordinator directly. If you are not located near a current site, contact our repository director to be put on the list for notification of new sites. If you are diagnosed with Neuromyelitis Optica and do not live near a current site, you may also contact the NMO Repository Study Nurse for more information about how you may participate.
Upon contacting the enrolling site, you will be screened by the site staff against the inclusion/exclusion criteria to ensure that you are eligible to participate.
Step 2: Preparing for the first appointment
If you are eligible to participate, the site will schedule an appointment for you to visit the clinic. Prior to your study appointment you will be given a checklist of items to bring to the appointment. This is particularly important if you are not a patient at the site where you are enrolling. You will also be given a copy of the case report form in advance of your study appointment so that you may review and prepare the information required for the interview.
Step 3: Providing informed consent
At your appointment, before providing any samples or data, you will be given an informed consent form which describes the study procedures in detail. The study coordinator or physician at the enrolling site will also describe the study processes to you and will answer any questions that you may have regarding your participation in the study. You should feel as though you fully understand your participation in the study before signing the informed consent form.
Once you have agreed to participate and you have signed the informed consent, the following steps will be taken, but may happen in different orders at different sites:
If you are a current study participant and you have a question or concern about your involvement in the Repository, please contact the study coordinator at the site where you enrolled. You may also find contact information in the copy of the informed consent form that you signed prior to participating.
We invite you to stay informed about our progress by signing up for our free newsletter or email mailing lists.