Journal Volume 4 - January 2010
Article 12
Accelerated Cure Project: The Accelerated Cure Project is dedicated to determining the causes and accelerating research into finding the cures for NMO, MS, TM, ADEM, and ON. One of ACP’s primary initiatives is the building of a repository of blood samples and data from people with these disorders. These samples are distributed to researchers studying the causes of these diseases, thereby accelerating research. The repository provides a common population of samples useful for a wide variety of studies that enables results from different research perspectives to be easily combined and correlated. The repository contains various types of samples and data that can support scientists working in many fields, such as genetics, nutrition, virology, and more. Researchers gaining access to the repository must return their results to the database to be shared with other researchers; this allows for cross-correlation of their results with all other studies performed using the same samples. Your information will be handled confidentially. Some of the centers will accept children, while others will not, so please check the center closest to you. While samples continue to come into the repository through increased enrollment, they also continue to be distributed in support of research into the causes of MS, TM, NMO, ADEM, and ON. You can learn more about the research being supported by the Accelerated Cure Project repository samples and data by visiting: www.acceleratedcure.org/repository/research.php One of the scientific teams using the ACP repository needs samples from people with ADEM right now! This team has started a company to develop tests that will diagnose diseases and predict their course. They are currently looking at molecules in the blood of people with MS, ADEM, NMO, and ON to see how these diseases are alike and different. Your participation in the repository will help this team carry out its research, providing new insights into the biology of ADEM, and will help other scientists in the future also. Currently, we have only 13 people with ADEM enrolled in the ACP repository. If we are going to get good research done on ADEM, we are going to need a much larger number of people enrolled. ADEM is rare – you can’t count on someone else to do this for you. You hold part of the answer to these most fundamental and critical issues … what happened to you and why? Please help us to find the answers. In addition to expanding the breadth of the repository through greater collection site access, ACP is also expanding the depth of it through the collection of updated data and samples from already enrolled participants. One of the particularly valuable aspects of the ACP repository is that it is a longitudinal study, meaning that participants are asked to return over the course of their lifetime for follow-up visits. These visits allow for the collection of updated health information, replenishment of blood samples, and provide the opportunity to ask new questions on topics that were not addressed during the first visit. Having participants return for follow-up visits means that ACP can provide valuable samples and data to researchers in support of the study of disease course, the impact of medications on progression, among other critical areas. ACP has announced that the first follow-up visits are now underway. Participants have enthusiastically returned to provide updated data, new blood samples, and to answer the questions that have been added to the interview related to stress and trauma. If you are a repository participant with a demyelinating disease and you enrolled more than a year ago into the repository, you may be getting a phone call or postcard soon asking you to return and continue your involvement. Your continued involvement enhances the value of the repository and accelerates research into the causes of ADEM, MS, NMO, ON and TM. ACP, in partnership with the Guthy-Jackson Charitable Foundation, is seeking to enroll people with NMO into our repository. If you have been diagnosed with NMO and have not already enrolled in the ACP repository, we welcome your participation. Participation consists of a blood draw and an interview. This is not a treatment study. There are no drugs involved. If you do not live in close proximity to a collection site, funds may be available to offset travel expenses. Additionally, if you are unable to travel to one of ACP’s collection sites, a nurse may be available to travel to your home or office to conduct the study visit on location. If you have been diagnosed with NMO, have not previously participated in the ACP repository, and have an interest in learning more, please contact the repository director as soon as possible for more information. The TMA made a $20,000 contribution to ACP for the purpose of enrolling people into the repository with ADEM, NMO, ON and TM. The check was presented at a special ACP dinner event that was held in November. Dr. Benjamin Greenberg represented the TMA and delivered a wonderful speech describing our Association and the importance of our relationship with ACP. We continue to enroll new subjects at all of the collection sites. To learn more about participating in the repository, contact the study coordinator at the site of interest; call ACP’s repository director, Sara Loud, at (781)487-0032, or visit the repository section of the ACP website at www.acceleratedcure.org/repository. Thank you for your willingness to get involved! Repository Collection Sites Barrow Neurological Institute Beth Israel Deaconess Medical Center Johns Hopkins School of Medicine Multiple Sclerosis Research Center of New York Shepherd Center, Inc. The Ohio State University Medical Center Multiple Sclerosis Center Anschutz Medical Campus, University of Colorado University of Massachusetts Medical School Multiple Sclerosis Clinical Center Accelerated Cure Project for Multiple Sclerosis |