Transverse Myelitis Association
Journal Volume 3 - June 2008

Article 14

Recruiting for ACP Repository: Help us to Find the Causes and Cures for TM, ADEM, ON, NMO, MS
Jana Goins

The Johns Hopkins University is working in conjunction with the Accelerated Cure Project for Multiple Sclerosis (ACP) to conduct a large scale research study which will play an important role in determining significant causal factors and disease trends for demyelinating disorders such as Multiple Sclerosis (MS), Transverse Myelitis (TM), Optic Neuritis (ON), Devic’s Syndrome (NMO), Acute Disseminated Encephalomyelitis (ADEM) and other related diseases. 

Several major academic centers located throughout the country will serve as coordinating project sites, creating a national network of collection sites.  Study enrollment is targeted at 10,000 subjects over ten years.  Enrolled subjects will be asked to contribute personal data (such as medical history and family information) and a blood sample. The personal data collected from all subjects will be combined into a single database while the blood samples will be processed at a central laboratory and stored.  The complete anonymity of study participants will be protected.  The result will be the creation of a comprehensive information system and specimen repository from which researchers can request samples to conduct in-depth analyses on various disease aspects. This study will play an important role in increasing the current knowledge of demyelinating diseases and therefore aid researchers in the development of better diagnostic techniques and cures for these diseases.

This is your chance to help! We are enrolling patients with multiple sclerosis, transverse myelitis, optic neuritis, acute disseminated encephalomyelitis, neuromyelitis optica (Devic’s) or clinically isolated syndromes (one demyelinating attack, but not fulfilling the diagnostic criteria for MS). Those who are currently patients at Johns Hopkins will be able to join the study without a referral from their physician, and will just need to contact the Johns Hopkins project coordinator for study enrollment information.  Johns Hopkins patients who are aware of their next scheduled clinic date may get in touch with the project coordinator beforehand in order to schedule a study meeting during this clinic visit. Subjects participating at Johns Hopkins will be offered a $25 check to compensate for lunch and parking on the day of the visit, but will not be reimbursed for any travel expenses.  At this time, patients receiving care outside of Johns Hopkins will be subject to additional enrollment requirements.

Please note, the enrollment requirements and participant compensation may vary by study site.  If you are interested in getting involved, please contact your nearest participating center for further information regarding the enrollment process.

In addition to enrolling subjects with one of the specified demyelinating diseases, we are asking participants to refer affected and unaffected relatives as well as unaffected matched “controls” (such as a childhood friend who grew up in the same area as you or a spouse) for participation in the study. 

This is a very exciting opportunity for both patients and researchers around the country to take part in a large-scale dynamic project that will work to improve our knowledge about demyelinating diseases. We welcome enthusiasm and positive attitudes! By volunteering your time and effort to this project, you will be making a significant contribution to the development of new treatments, and ultimately a cure, for these diseases.

Participating Centers

Johns Hopkins Medical Institution (Baltimore, MD)
Jana Goins
acp-study-hopkins@acceleratedcure.org
(410)502-6160

UMass Memorial (Worcester, MA)
Janice Weaver
acp-study-umass@acceleratedcure.org
(508)793-6562

Shepherd Center (Atlanta, GA)
Elizabeth Iski
acp-study-shepherd@acceleratedcure.org
(404)350-3116

University of Texas Southwestern (Dallas, TX)
Gina Remington
acp-study-utsw@acceleratedcure.org
(214)645-0560

Multiple Sclerosis Research Center of New York (New York, NY)
Lauren Puccio
acp-study-msrcny@acceleratedcure.org
(212)265-8070

Barrow Neurological Institute (Phoenix, AZ)
Breanna Bullock
acp-study-barrow@acceleratedcure.org
(602)406-6211

Study Sponsor

Accelerated Cure Project
Sara Loud, Repository Director
300 Fifth Avenue
Waltham, MA 02451
acp-study-director@acceleratedcure.org
(781)487-0032
www.acceleratedcure.org

Neuroimmunologic Disorders Sample Repository:
http://www.acceleratedcure.org/curemap/tissuebank.php

 

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