TM, Devic's, ADEM, ON Repository - you can pariticipate

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TM, Devic's, ADEM, ON Repository - you can pariticipate

Postby jlubin » Sat Sep 02, 2006 6:25 pm

The Accelerated Cure Project is creating a repository of blood, data, and clinical records for MS, NMO, TM, ADEM, ON to be used to determine the causes of these diseases.

While we are primarily an MS organization, we feel it is important to look at other related demyelinating diseases in order to figure them all out together.

The more people with Transverse Myelitis (TM), Neuromyelitis Optica (NMO) or Devic's, Acute Disseminated Encephalomyelitis (ADEM), and Optic Neuritis (ON) that we can recruit, the more research into it we can support. If you live near Worcester, MA, Atlanta GA, Baltimore MD, Dallas TX, or NY NY you can participate.

If you are near one of the centers listed below you can call the person listed and tell them you are interested in participating in the Accelerated Cure Project repository study. The study coordinator will explain what is involved.

Curious parties can check here for information in advance:
http://www.acceleratedcure.org/curemap/repository.php

-------------------------------------------------------------------------------
Contact Information:

Accelerated Cure Project (for general questions)
Contact: Sara Loud 781-487-0032
sloud@acceleratedcure.org

Johns Hopkins Baltimore, MD
Contact: Jana Goins 410-502-6160

Multiple Sclerosis Research Center of New York
Contact: Emily Denicore Eisenberg 212-265-8070

Shepherd Center Atlanta, GA
Contact: Elizabeth Iski 404-350-3116

University of Massachusetts Medical School Worcester, MA
Contact: Janice Weaver 508-793-6562

University of Texas Southwestern Dallas, TX
Contact: Gina Remington 214-645-0560
Last edited by jlubin on Sun Sep 03, 2006 4:31 pm, edited 2 times in total.
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Postby jlubin » Sun Sep 03, 2006 8:43 am

An article will be coming out in the next newsletter (planned for Oct 2006) providing more details about recruiting for the study. We would like people who are scheduled for appointments at the JHTMC with Drs. Kerr, Greenberg, Pardo or Kaplin to please get in touch with Jana before their appointment and schedule in time to participate in the study while they are in Baltimore.
Jim Lubin
TM onset in 1989 at age 21, level C2, vent dependent quad
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Postby jlubin » Sat Dec 23, 2006 9:48 am

Recruiting for ACP Study: Help us to Find the Causes and Cures for TM, ADEM, NMO, MS and the other Neuroimmunologic Disorders
Jana Goins

This year 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 biological samples. The personal data collected from all subjects will be combined into a single database while the biological 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.

Now 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 may 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
jgoins3@jhmi.edu
(410)502-6160

UMass Memorial (Worcester, MA)
Janice Weaver
weavej01@UMMHC.ORG
(508)793-6562

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

University of Texas Southwestern (Dallas, TX)
Gina Remington
Gina.Remington@utsouthwestern.edu
(214)645-0560

Multiple Sclerosis Research Center of New York (New York, NY)
Emily Denicore Eisenberg
edenicore@imsmp.org
(212)265-8070

Study Sponsor

Accelerated Cure Project
Sara Loud
sloud@acceleratedcure.org
(781)487-0032
www.acceleratedcure.org

Neuroimmunologic Disorders Sample Respository:
http://www.acceleratedcure.org/curemap/tissuebank.php
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Re: TM, Devic's, ADEM, ON Repository - you can pariticipate

Postby jlubin » Thu Sep 25, 2008 10:44 am




2008 Rare Neuroimmunologic Disorders Symposium,
Accelerated Cure Project Presentation,
Art Mellor,
Benjamin Greenberg
Jim Lubin
TM onset in 1989 at age 21, level C2, vent dependent quad
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Re: TM, Devic's, ADEM, ON Repository - you can pariticipate

Postby melanie » Sun Oct 12, 2008 12:05 pm

Is this still going in? I'm in Philadelphia and would be willing to participate.

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Re: TM, Devic's, ADEM, ON Repository - you can pariticipate

Postby jlubin » Mon Oct 13, 2008 7:11 pm

yes the collecting for the repository is ongoing with no end date currently scheduled.
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TM onset in 1989 at age 21, level C2, vent dependent quad
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Re: TM, Devic's, ADEM, ON Repository - you can pariticipate

Postby cwells » Thu Jan 29, 2009 3:05 pm

Perhaps I would qualify.... I was diagnosed with TM in August. Since then I have had two bouts of ON in my right eye. My neurologist repeated a MRI to see if I showed additional lesions. None were found. He did however begin me on Re-bif injections stating "they will delay the onset of MS." The side effects of the medication are tough to handle. I live about 40 miles outside of Atlanta and both my neurologist and rehab doctors are there. Should I contact the Atlanta group or is this study closed?

Thanks,
Carol
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Re: TM, Devic's, ADEM, ON Repository - you can pariticipate

Postby KCICC » Sun Aug 16, 2009 8:42 am

Beth Israel Deaconess Hospital in Boston is a newly added repository site for the accelerated cure project.
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Re: TM, Devic's, ADEM, ON Repository - you can pariticipate

Postby kmsinlex » Wed Dec 08, 2010 8:58 am

Hi. I am a female who was diagnosed with ADEM in July, 2009 at the age of 61. Prior to this I was in excellent health. In early Oct, 20 10, I went to Ohio State University in Columbus, OH, and participated in this very worthwhile project. The researcher was pleased that I came because I was the only adult with ADEM that he had seen. We live about 3 hours from Columbus, so I arranged for us to drive up the night before, stay at a local motel, participate in the project in the morning, and then drive home. With preparation, it all worked out well. Here is the contact information for this Center:

The Ohio State University Medical Center
Multiple Sclerosis Center
1654 Upham Drive, 445 Means Hall
Columbus, OH 43210
Principal Investigator: Michael Racke, MD
Study Coordinator: Jamie McGowan
Study Coordinator Phone: 614-247-6856
Study Coordinator E-mail: acp-study-osu0807_no_spam_please_@i_mean_it.no_spam_whatsoever.acceleratedcure.org

Also, check the Contact page for a complete list of locations in the US which are participating:

http://www.acceleratedcure.org/repository/contact.php
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Re: TM, Devic's, ADEM, ON Repository - you can pariticipate

Postby lordkevin » Wed Jan 02, 2013 2:45 am

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