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
DANA POINT, CA/SALT LAKE CITY, UT, Oct. 17 /MarketWire/ –- 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, R.A.R.E. 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.