Transverse Myelitis Association
Volume 9 Issue 1
Article 8
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. One of the frustrations encountered by ACP is when someone wants to participate in the study, but can’t as they are not near (or able to travel) to one of the collection sites. ACP is eager to expand the geographic reach and will continue to open new sites as funding allows. ACP is proud to announce new collection sites have been open for enrollment! One of the new repository collection sites is at The Ohio State University Multiple Sclerosis Center (OSU) in Columbus, Ohio. Dr. Michael Racke, chairman of OSU’s neurology department and long-time member of Accelerated Cure Project’s scientific advisory board, will lead the collection site at OSU. The study coordinator at the OSU MS Center is Lisa Hafer. The OSU site staff enrolled their first subject on March 30, 2009. Beth Israel Deaconess Medical Center is a new collection site in Boston. The center’s Principal investigator is neurologist, Dr. R. Philip Kinkel with study coordinator, Sarah Konkel. The first sample collection took place Tuesday, March 10, 2009. A new collection site was also opened at the Rocky Mountain MS Center at Anschutz Medical Campus in Aurora, Colorado, led by principal investigator, Dr. Tim Vollmer. If you are interested in participating in the repository at the Denver location, please call study coordinator, Sydni Edwards at (303)724-2197. 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. 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. Recent sample distributions include the distribution of 987 samples to Dr. Julius Birnbaum of Johns Hopkins in support of his research related to neurodegeneration in people with secondary progressive MS. We also have recently distributed samples from 10 subjects with NMO, along with 5 controls, to Dr. Alan Verkman at UCSF who is investigating the role the antibody NMO-IgG may play in cell functions. 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 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. We also continue to enroll new subjects at all of our 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. 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 Anschutz Medical Campus, University of Colorado University of Massachusetts Medical School Multiple Sclerosis Clinical Center Accelerated Cure Project for Multiple Sclerosis |
Accelerated Cure Project: New Repository Sites, Initiation of Follow-Up Visits and Neuromyelitis Optica Partnership with the Guthy-Jackson Charitable FoundationGo to Newsletter Index
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