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International Spinal Muscular Atrophy Patient Registry (the Registry) is a bridge connecting Spinal Muscular Atrophy (SMA) patients and families with researchers who are investigating SMA. The Registry is housed at Indiana University School of Medicine in the Department of Medical and Molecular Genetics. Individuals and families with SMA join the Registry and provide information on various aspects of SMA such as symptoms, age of onset, and treatment. SMA researchers can then use the Registry as a data/information resource and for recruitment of participants for research studies and clinical trials. Making this connection between families and researchers is an important step in SMA research.
Information in their website is provided for both potential participants and potential researchers. If you have any questions about the Registry, please feel free to contact the Registry staff.
ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. Learn more About Clinical Studies and About This Site, including relevant History, Policies, and Laws. A clinical trial is a test in humans of an experimental medication or therapy. Clinical trials are experiments, not treatments, and participation requires careful consideration as a trial could be of no benefit or perhaps harm can occur.
Families of SMA Research Programs The ultimate goal at Families of SMA is to accelerate the discovery of an effective treatment and cure for SMA
To reach this end, their research program has three distinct parts:
- basic research to unravel the biology of SMA,
- drug discovery to make SMA drugs, including small molecules, oligonucleotides, gene therapy, and stem cells, and
- clinical trial initiatives to test new drugs in humans.
FightSMA, known legally as "Andrew's Buddies Corporation," works to bring higher levels of awareness and understanding of Spinal Muscular Atrophy (SMA), and to strategically accelerate the search for a treatment and cure. FightSMA works intimately with leading SMA scientists from around the world, helping to articulate and support a focused research strategy.
Their website has wonderful information about SMA in general as well as the research that is currently being done.
MDA Spinal Muscular Atrophy Research is a comprehensive website on the genetics that concern SMA and the related research sstrategies that have been found and are currently being tried in different forms of SMA.
Project Cure Spinal Muscular Atrophy is a collaborative initiative between Families of SMA and clinical investigators designed to help facilitate the rapid translation of promising new therapies to individuals with SMA. The primary goal of Project Cure SMA is to develop safe and well-tolerated clinical protocols to help identify effective therapies for SMA. This website offers information on clinical trials taking place in locations throughout the United States.
Spinal Muscular Atrophy Research News
is an excellent news reel website, updated with the latest articles on Spinal Muscular Atrophy research information. This website features many view options making the articles easy to read based on your preferences.
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Columbia University Department of Neurology Spinal Muscular Atrophy Clinical Research Center at the Pediatric SMA Clinical Research Center, a neurologist with expertise in SMA and pediatric neuromuscular disease conducts the SMA evaluation. The first step in being evaluated is to be examined by their team of physicians at the clinic. A thorough neurological examination will be conducted and previous tests reviewed. If indicated, additional diagnostic examinations (tests) may be recommended. The Pediatric SMA Clinical Research Center, which operates conjointly with the Pediatric Neuromuscular Clinic at Columbia University, is organized according to a team model. The clinic offers special expertise in SMA and other neuromuscular disorders, and provides access to highly skilled neurologists, pulmonologists, cardiologists, physiatrists, orthopedists, psychologists, nurse practitioners, and therapists who work collaboratively to deliver the utmost compassionate, high quality care to each of the patients. Clinical care at the clinic mirrors the published Standard of Care guidelines for Spinal Muscular Atrophy, Duchenne Muscular Dystrophy and related neuromuscular disorders. SMA Clinic has been established, with the generous support of the SMA Foundation. There are several research projects that are open for enrollment. Visit the website to find contact information for each project.
Nationwide Children's Spinal Muscular Atrophy Clinic is a joint program between Nationwide Children’s Hospital and The Ohio State University Wexner Medical Center, providing comprehensive, multidisciplinary care for patients from across the United States. They assist patients and families cope with the chronic effects of SMA. We care for infants, children and adults. The Spinal Muscular Atrophy (SMA) Clinic accepts referrals from primary care physicians and pediatric specialists from the United States and internationally. To make a referral, there are three options:
Request a Spinal Muscular Atrophy (SMA) clinic appointment (option under "Neuromuscular Disorders"),
Fax a referral request to (614) 722-4000,
Make a referral and schedule by phone, call (614) 722-6200 or (877) 722-6220. They are involved in research in the The NeuroNEXT SMA Biomarker Study, Clinical Research and Translational Research.
For more information visit their website or contact them at the
Nationwide Children's Hospital,
700 Children's Drive Columbus, Ohio 43205 or call 614-722-2000
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[Updated June 30, 2014]
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