First-Ever National Neuropathy Patient Registry Aims to Accelerate Research for Neurological Epidemic Impacting Millions
New York, NY (PRWEB) May 12, 2014 -- The Neuropathy Association and ResearchMatch announce they are collaborating to launch a patient registry to improve and expedite neuropathy research. The Neuropathy Association is a national non-profit patient advocacy organization dedicated to bringing help, hope and healing to people with various forms of neuropathy; ResearchMatch is the first nationwide, non-profit, volunteer, research recruitment platform for all health conditions. According to Kathleen Edson, community engagement manager at ResearchMatch, "The registry collaboration aims to bring together two groups of people who are searching for each other: people who are trying to find neuropathy research studies, and researchers who are looking for people to participate in their studies."
ResearchMatch’s free, secure, online registry has been developed by major academic institutions across the U.S. to engage the general public in today’s ethical, expedited research. This innovative collaboration with The Neuropathy Association establishes a dedicated nationally accessible registry for neuropathy that provides a voice for all neuropathy patients in the research process. Volunteers who register and indicate “neuropathy” as one of their conditions will be prompted to answer additional questions about their condition to better enhance the precision and prescreening process for matching volunteers with research teams who are studying all forms of peripheral neuropathy.
A free informational webinar explaining the registry will be held on Wednesday, May 21, from 7:00- 8:00 pm Eastern followed by a half hour question and answer session on The Neuropathy Association’s Facebook page. To register for the webinar, please visit https://www..gotomeeting.com/register/955787529. To learn more about the registry and/or to register, please visit http://www.researchmatch.org.
Peripheral neuropathy, or “peripheral nerve damage,” impacts well over 20 million Americans (at least 1 in 15), making it one of the most common chronic diseases and a leading cause of adult disability. Neuropathy disrupts the body’s ability to communicate with its muscles, organs, and tissues. Symptoms can include numbness, tingling, weakness, and pain often beginning in the hands and feet. With early diagnosis, it can often be controlled and quality of life restored. If ignored, symptoms can intensify to loss of sensation, weakness, unremitting pain, and/or disability. Even though neuropathy is at epidemic proportions in the U.S. and abroad, it is often misunderstood, mis- and under-diagnosed, as well as inadequately treated. Limited research opportunities and limited research funding have limited the scope of treatment and curative possibilities for specific neuropathy and neuropathic pain conditions.
“Patients and researchers alike are frustrated with the slow progress being made with neuropathy research. Patients feel disenfranchised from the current clinical trial process because they are still unable connect with the research and researchers addressing their specific health issues; researchers are also finding it challenging to identify qualified research participants. Harnessing the power of today’s on-line technologies, ResearchMatch’s unique, elegant and easy-to-use platform—already accessible to all National Institutes of Health (NIH)-funded researchers as well as the majority of leading researchers across the U.S.— empowers patients to self-identify for research studies and enables researchers to match their work with the types of study participants they seek,” shares Tina Tockarshewsky, president and CEO, The Neuropathy Association.
“A significant factor delaying the development of new treatments is the recruitment and retention of clinical research study participants—both patients as well as healthy volunteers. We’re working proactively with researchers and patients to drive awareness for on-going clinical research study opportunities and to help with recruitment efforts. This collaboration with ResearchMatch is a critical addition to our toolkit and to our overall efforts to better understand neuropathy and bring forth new treatments and cures,” notes Natacha T. Pires, MBBS, director of medical and public affairs at The Neuropathy Association.
"This registry increases the ability to bring a wider scope of volunteers to a broader range of researchers who are working on the spectrum of challenges impacting neuropathy patients," observes Dr. Thomas Brannagan, The Neuropathy Association's medical advisor. "Often studies are stalled by difficulty with recruitment and delays. By increasing the likelihood of matching candidates for study recruitment, we increase the probability that more neuropathy research can move forward quickly."
Of the over 100 known types of neuropathy, diabetic neuropathy represents over a third of all neuropathies, making diabetes the leading cause. A third of neuropathies are “idiopathic” (unknown cause). Other neuropathies include autoimmune-related, hereditary, cancer or chemotherapy-related, entrapment or trauma-related, and neuropathies related to causes such as toxin-induced, nutritional deficiencies, gastro-intestinal disorders, metabolic diseases, or infectious diseases (including Lyme and HIV/AIDS).
This patient registry launch kicks off Neuropathy Awareness Week, May 12-16, 2014. This tenth annual event was initiated by The Neuropathy Association to change perceptions of and promote prevention of this progressive, chronic, and often extremely painful neurological disease and growing national epidemic. Working together with advocates across the U.S. and abroad, The Neuropathy Association and its community of patients, their loved ones, caregivers, healthcare professionals, and industry partners are pleased to announce the following events occurring during and in tandem with Neuropathy Awareness Week:
• PECO Building Lighting, Philadelphia, PA (May 11)
• Niagara Falls Illumination-Canadian and American Falls (May 14)
• SunTrust Financial Center Tower Lighting, Tampa, FL (May 15-16)
• Zakim Bridge Lighting, Boston, MA (May 20)
• Indy 500 Jumbo-trons Feature Neuropathy Public Service Announcement (PSA), Indianapolis, IN (May 23-25)
About The Neuropathy Association
Founded in 1995, The Neuropathy Association is the leading national nonprofit organization providing neuropathy patient support, education, advocacy, and the promotion of research into the causes of and cures for peripheral neuropathies through its nationwide network of members, regional chapters, 15 medical Centers of Excellence, and 150 patient support groups.
About ResearchMatch
ResearchMatch is a national partnership created as a centralized, web-based recruitment registry, connecting individuals who are interested in participating in research with researchers nationwide. The site is a funded in part by the National Institutes of Health (NIH) and Clinical and Translational Science Award (CTSA) program grants. The CTSA program is led by the NIH’s National Center for Advancing Translational Science (NCATS). The content of this website is solely the responsibility of ResearchMatch and Vanderbilt University and does not necessarily represent the official views of the NIH.
Tina Tockarshewsky, The Neuropathy Association, http://www.neuropathy.org, +1 (212) 692-0662, [email protected]
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