I obtained your information from the U.S. National Library of Medicine
(NLM) and ClinicalTrials.gov.
Your research and studies are remarkable. I am bringing awareness to
Devic's Disease/NMO as well as raising funds for research and support for those wo are diagnosed and affected by this disease. I wanted to know how the study is going and is there any information you can share with me that will benefit and encourage those diagnosed by this disease. Do you have plans for more Clinical trials? If so may I publish the information on my non-profit website?
Dear Ms. Sheckles-Bennet,
At this time, the clinical trial that we are working on is more of a
collection of data from patients who have been diagnosed with NMO. The project is a national biorepository for demyelinating diseases where a blood sample and corresponding epidemiological and medical information is collected. Once research groups come to us with a study in hand, we supply the samples and information they will use in their study. We hope that this will accelerate research into the causes of these diseases, especially the rare and severe diseases such as NMO. We have been working with the Guthy Jackson Foundation in a special effort to collect as many NMO samples as we can so that research studies in this area are valid and conclusive. Therefore, this project is not a traditional clinical trial that distributes new drug treatments to NMO patients, but rather a collection of information that we feel is important in learning more about what is causing the disease in the population. For more information, please visit: www.acceleratedcure.org and click on "Repository". Also, for more info about the Guthy Jackson Foundation and their specific interest in NMO, please visit: Best of luck with everything. You are doing a great thing and I think
it is important to help raise awarenes about these more rare
neurological diseases.
Take care,
Jana Goins, MHS
Senior Research Coordinator
Accelerated Cure Project for MS
Rare Neuroimmunologic Diseases
Department of Neurology
Johns Hopkins School of Medicine
Wednesday, August 12, 2009
Dear Ms. Sheckles,
You recently submitted an online inquiry to the Genetic and Rare Diseases (GARD) Information Center about Devic disease. Your were particularly interested in obtaining statistical information with respect to how many or what percentage of individuals are diagnosed with this condition.
Unfortunately for the rare diseases, there's often not a calculated incidence or prevalence. There is no official method for tracking these conditions. Nonetheless, we have identified information resources that you might find helpful. If any of the links we have provided do not work, please copy and paste the entire address into your browser.
If you have other technical difficulties with this e-mail, please contact GARDinfo@nih.gov or 888-205-2311 for technical assistance. One resource which offers some limited statistical information is Orphanet, a database dedicated to information on rare diseases and orphan drugs.
They state that: NMO [Neuromyelitis optica] has a worldwide distribution and estimated prevalence of 1-2/100,000.
Access to this database is free of charge. You can access the page on Devic disease (neuromyelitis optica) by visiting Orphanet’s home page and typing “Devic disease” in the search box.
You may also access this page by clicking here.
Additional statistical information is available from the Goetz: Textbook of Clinical Neurology, 3rd ed. Copyright © 2007 Saunders, An Imprint of Elsevier. pp.1126-1128. This medical textbook states that:
Devic's disease is said to be more common in Japan and East Asia, although even there it is uncommon (less than 5 per 100,000).
We hope that these resources give you a good starting point in your research.
If you are interested in viewing our updated web page on Devic disease, please visit the following link.
If you have any other concerns, please contact us again.
Sincerely,
Lois Rednal
Information Specialist
The Genetic and Rare Diseases Information Center was established by the National Human Genome Research Institute and the Office of Rare Diseases Research at the National Institutes of Health to provide responses to public information requests. Information Specialists are available Monday through Friday, 12:00 p.m. to 6:00 p.m. Eastern time (excluding Federal holidays), to respond to questions about genetic and rare diseases.
PO Box 8126
Gaithersburg , MD 20898-8126
Toll-free: 1-888-205-2311
TTY: 1-888-205-3223
Fax: 202-966-5689
Important Disclaimer:
The materials provided are for informational or educational purposes only and are not intended as a substitute for professional medical care, advice, diagnosis, or treatment. This material does not represent an endorsement of any specific tests or products by the National Human Genome Research Institute or the Office of Rare Diseases at the National Institutes of Health. We cannot guarantee the accuracy, completeness, timeliness, or usefulness of the opinions, advice, services, or other information. Moreover, we strongly recommend that you seek the advice of your health care provider with any questions regarding your medical care.
