If you are coming to the Rare Neuroimmunologic Disorders Symposium in Seattle, you will be able to enroll in the Accelerated Cure Project Repository.  This is a national repository of samples and data available for use by scientists studying TM, ADEM, NMO, ON and MS.  We will be enrolling people who have one of these diseases and will also enroll family members as controls for the studies.  A team from Johns Hopkins will be setting up shop at the hotel and will be collecting blood samples and questionnaires from willing participants.  This is an important effort to augment the number of patients with rare neuroimmunologic disorders within this repository.  For meaningful studies to be done, we need to substantially increase the numbers of subjects with these rare disorders in the repository.  The Seattle symposium represents an incredible opportunity for us to begin to achieve this important goal; it is the only time we bring together a significant number of people with these rare neuroimmunologic disorders.  The repository data is being used by researchers around the world trying to determine the causes of these disorders, identifying better tools for diagnosing these disorders and finding more effective treatments.  

In order to participate, you will need to do the following:

1. Download and fill out the ACP questionnaire.  Be certain to bring the questionnaire with you to Seattle. Both patients AND controls need to fill out the questionnaire.  You can download the questionnaire at http://www.acceleratedcure.org/repository/downloads/ACP_CRF.pdf or contact Jana Goins to be sent a copy by mail. 

2. Contact Jana Goins at Johns Hopkins (jgoins3@jhmi.edu; 410-502-6160) as quickly as possible.  Please let Jana know that you are enrolling in the repository.  We will need an accurate count of the people who will enroll so that we can bring adequate supplies. 

3. Encourage family members who are coming with you to enroll in the repository to serve as controls in studies.  Please report the number of family members who will be enrolling as controls to Jana Goins.  Any family members who are not coming with you can instead enroll at our sites in Worcester, MA; New York, NY; Baltimore, MD, Atlanta GA; Dallas, TX; or Phoenix, AZ.  See http://wwww.acceleratedcure.org/repository/contact.php for location information.

4. YOU MUST BRING MEDICAL RECORDS AND MRIs WITH YOU TO SEATTLE.  We will need your earliest set of MRIs available (preferably around the time of diagnosis) and any subsequent MRIs you have had.  Please do not bring any more than three subsequent MRIs.  We will want clinic notes, hospital notes if available and any lab studies you have had done as part of your initial evaluation/diagnosis. This is a good opportunity to collect your complete medical record if you haven’t already done so! MRIs WILL BE REVIEWED ON SITE AND RETURNED TO YOU.

5. YOU WILL ALSO NEED TO HAVE A SHORT SECTION FILLED OUT BY YOUR NEUROLOGIST.

6. Once we know how many people to expect we will set up a schedule for enrollment and email everyone the day and time they should report for enrollment.

For more information about the Accelerated Cure Project Repository, go to http://www.acceleratedcure.org/repository/ or contact Sara Loud, Repository Director, at (781)487-0032 or sloud@acceleratedcure.org.