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For Study Participants

For Study Participants

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.

Benefits of enrolling as a study participant

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.

Steps to enrolling as a study participant

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.

Participating as a study participant

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:

  • The study coordinator will document your confidential contact information and assign you a unique five-character barcode. All of your data and samples will be marked only with this barcode in order to protect your anonymity. Only Accelerated Cure Project will know the link between your identity and the barcode and this information is kept in a private and secure location.
  • Up to 110 milliliters (about seven tablespoons) of blood will be drawn from you. These blood samples will be marked with your barcode, processed at the site and sent to the central laboratory for further processing, quality control, and storage.
  • The study coordinator will conduct an interview with you based on the case report form. During this interview you will answer questions on several topics including your environmental, geographical, and medical history and your current medical status. The data that you provide will be stored electronically at our data management vendor, Document Solutions Group, Inc. (DSG), referenced only by your unique barcode.
  • If you have one of the covered demyelinating diseases, the neurologist will see you to evaluate your current medical status and will also document details concerning how you were diagnosed with your disease.
  • You may be asked to refer others to the study. In particular, we are interested in enrolling any blood relatives who are diagnosed with a demyelinating disease, any identical siblings (affected or unaffected) and one or two unaffected blood relatives. If you have no relatives available to participate in the study, you may be asked to refer an unrelated matched control. This part of the study is optional, but enhances the value of the samples collected.
  • You will be reimbursed a nominal amount for time, travel, transportation, etc. You will also be given an opportunity to sign up for a free Accelerated Cure Project t-shirt and our free newsletter. The newsletter provides updates on the Repository, fundraising events, and other items related to our operations.
  • This study is longitudinal, meaning that the principal investigator or study staff at the enrolling site may contact you every year or two for a follow-up visit which may include additional blood sample collection, additional interview questions, and the updating of medical status. These additional visits are optional, but greatly enhance the usefulness of your samples. You may withdraw from the study at any time as described in the informed consent form.

Information for currently enrolled study participants

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.

Questions about enrolling as a study participant

If you are a current participant, contact the study coordinator at the site where you enrolled.

If you are not a current participant, please contact the repository director at Accelerated Cure Project.