Entrants to Submit Brief Video Clips Telling Their Unique Stories in Exchange for Chance to Win Leading Life Sciences Software—Designed to Accelerate the Cure for Their Underfunded Disease
DANA POINT, CA/SALT LAKE CITY, UT, June 20 /MarketWire/ –- In the spirit of Rare Disease Day on Feb. 28th, the Children’s Rare Disease Network (www.crdnetwork.org) received a donation from RemedyMD® of its RegistryOnDemand™ product specifically created for rare disease research organizations, and in turn the CRDN and RemedyMD today announce the official starting date of a contest to give this research registry tool away to one lucky winner in the rare disease community. This 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.
A live webinar will be held this Wednesday, June 22 providing an overview of the software technology which anyone can attend for free titled, “Using Clinical Data to Accelerate Rare Disease Research”. It begins at 2 PM (EDT); visit https://www1.gotomeeting.com/register/905474040 to register. Nicole Boice, founder and president of the Children’s Rare Disease Network, will provide details about the giveaway live and friends or family members not directly involved in research are also encouraged to attend and learn.
This is in addition to a number of campaigns the CRDN is spearheading including The Global Genes Project (www.globalgenesproject.org) to drive awareness for the unmet medical needs of the global rare disease community.
Official rules for the free contest can be viewed at https://www.remedymd.com/RareDiseaseContest and, in brief, video entries are to be submitted by friends, families, disease sufferers, researchers or their respective disease organizations’ staff members telling their unique stories of why they should be chosen as the winner. After September 30th, a winner will be chosen by jury and notified 2 to 3 weeks thereafter. Entries will be posted online on the official YouTube channel both during and after the contest at https://www.youtube.com/RareDiseaseContest where visitors can vote for their favorite videos. The winner will receive a configured registry for collecting and analyzing data specific to his or her disease; details available at the official contest homepage.
“Using videos for giving away this rare disease registry is a great way to advance our goal of continuing education surrounding rare diseases and to generate the global awareness the rare disease community deserves,” said Nicole. “Many rare diseases affect small numbers of patients and because of the rarity of each condition, the public is often unaware of these chronic and life threatening conditions or healthcare IT software that is likely to accelerate that research. These videos will illustrate that these are real people fighting real challenges.”
RemedyMD CEO, Gary D. Kennedy, adds, “We provide research registries to many large institutions across the country, and are aware of the acute lack of funding for the rare disease community. It’s why we chose to give this valuable product away to one contest winner, and why we’ve always had a different pricing model for rare disease researchers. There’s no reason to develop this great technology if it’s not within reach of those who need it most.”
A staggering 250 million people worldwide are estimated to suffer from approximately 7,000 different forms of rare diseases for which there are limited treatment options. In the United States, statistics show that approximately 350 new drugs have been developed for the entire rare disease patient population since the passing of the Orphan Drug Act in 1983 despite incentives put in place by the federal government. Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthdays.
RemedyMD’s medical registry software leverages health care information technology to create better clinical decision support systems in rare disease research—whether you need a clinical registry, patient registry software, or a Lab Information Management System. RemedyMD helps researchers aggregate and harmonize data from widely disparate sources and then identify patterns that result in accelerated discoveries. These 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.