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The Foundation for Prader-Willi Research (FPWR) Wins $50,000 RemedyMD Rare Disease Research Registry Donated by the Children's Rare Disease Network (CRDN)Announcement Comes After a Summer of Entrants Submitting Video Clips Telling Their Unique Stories in Exchange for Chance to Win Leading Life Sciences Research Software (October 17, 2011)
DANA POINT, CA and SALT LAKE CITY, UT -- (Marketwire) -- 10/17/11 -- In the spirit of Rare Disease Day, the Children's Rare Disease Network (CRDN) received a donation from RemedyMD® (www.remedymd.com) of its Mosaic Platform RegistryOnDemand product specifically created for rare disease research organizations. In turn, the CRDN announced a plan to give this research registry tool away to one deserving winner via an online video contest. That winner, announced today, is the Foundation for Prader-Willi Research (FPWR). The FPWR (www.fpwr.org) is dedicated to eliminating the challenges of Prader-Willi Syndrome (PWS) that affecting about 1 in 25,000 live births. PWS is the most common genetic cause of obesity and typically causes low muscle tone, short stature, incomplete sexual development, slow metabolism and a constant and chronic feeling of hunger. Historically PWS leads to excessive eating and life-threatening obesity.
The Mosaic Platform medical research software allows for the collection of disease data from any available sources including self-reported patient longitudinal data, and features powerful query and analysis tools to accelerate breakthroughs in treatments or cures. RemedyMD also just announced its software will be implemented at 10 NCI (National Cancer Institute) locations as part of SAIC-Frederick's Advanced Technology Program.
"Using videos for giving away this rare disease registry was a great way to advance our goal of continuing education surrounding rare diseases and to generate global awareness," said Nicole Boice, founder and president, RARE Project. "Many rare diseases affect small numbers of patients and because of the rarity of each condition, research is underfunded."
RemedyMD will work with FPWR to configure its Mosaic Platform registry software to suit their needs -- including aggregating and harmonizing available data and showing them how to easily collect new data, so the integrated powerful querying tools can recognize new patterns to develop new treatments or cures. The unique configurability of the registry is what allows all rare disease researchers to collect exactly what they need -- while leveraging nearly a decade of software development they could not have spent millions to develop on their own.
"Building an International PWS registry is a real paradigm shift," commented Keegan Johnson, Executive Director of the FPWR. "Having a world class registry represents a significant opportunity to advance PWS research. A world of thanks needs to go out to the CRDN, RemedyMD, and our supporters."
Theresa Strong, Ph. D., chair of the FPWR Scientific Advisory Board, added, "We have an aggressive research agenda and are excited to link together research data from many organizations across the globe. The Mosaic Platform will allow us to see and analyze patterns that are not visible without a centralized view of the data. We believe allowing the best PWS researchers in the world to easily access this data will speed up new discoveries."
RemedyMD CEO, Gary D. Kennedy, also added, "This project was important to us because the difference our software can make to researchers is significant. We offer pricing especially for rare diseases, and so our biggest challenge is merely making the public aware that it is available, powerful, and attainable."
A recording of Wednesday's webinar when the Mosaic Platform disease registry software was briefly demonstrated and the winning video was announced can be viewed at https://www.1gotomeeting.com/register/234937185. Contest video entries can be viewed at www.YouTube.com/RareDiseaseContest including those for Nephrotic Syndrome and FSGS, Marshall-Smith Syndrome, Pseudotumor Cerebri, Eosinophil Associated Diseases, Congenital Myasthenic Syndrome, Disorders of Sex Development, Pachyonychia Congenita, and the winning video from Prader-Willi Syndrome.
RemedyMD's medical registry software leverages health care information technology to advance rare disease and other types of research. RemedyMD helps researchers aggregate and harmonize data from widely disparate sources and then identify patterns that result in accelerated discoveries. Our tools help collect, host, manage, and query data regardless of source; conduct experiments; manage studies and biospecimen; and help researchers build their own registries. For more information visit: www.RemedyMD.com.
About The Children's Rare Disease Network
The Children's Rare Disease Network is a program of RARE Project, a 501(c)(3) organization. RARE Project exists to raise awareness, build community and fund in-their-lifetime research, all in an effort to make the lives better for those living with rare diseases. For more information about the RARE Project or Children's Rare Disease Network, please visit us at www.rareproject.org
About the Foundation for Prader-Willi Research
The Foundation for Prader-Willi Research was established in 2003 by a small group of parents who saw the need to foster research that would help their children with Prader-Willi syndrome lead more healthy and fulfilling lives. Today, FPWR is composed of hundreds of parents, family members, researchers, and others who are interested in addressing the many issues related to PWS, including childhood obesity, developmental delay, psychiatric disorders and autism spectrum disorders.
The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research. For more information visit: www.fpwr.org. High quality research will lead to more effective treatments and an eventual cure for this disorder. By working together, we intend to free our loved ones from the burden of PWS, allowing them to lead full and independent lives.
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