March 28, 2022
Contact:Jon BergSanford Health Media Relations605-366-2432 / [email protected]
SIOUX FALLS, S.D. — One in 10 folks on the earth reside with a rare disease, affecting as many as 400 million folks worldwide. During the COVID-19 pandemic, some rare disease sufferers skilled challenges in acquiring a analysis and remedy choices to handle their situation. Currently, lower than six p.c of rare ailments have an accredited remedy.
David A. Pearce, PhD, president of research at Sanford Health, was not too long ago named Chair of the International Rare Disease Research Consortium (IRDiRC). As Chair of the IRDiRC, Dr. Pearce, together with a bunch of 59 different organizations from the world over, have a major focus to re-engage rare disease research the world over.
“The purpose set out by the IRDiRC is that, by 2027, we intend to offer analysis and remedy choices to rare disease sufferers inside one yr of them searching for medical consideration for his or her situation,” mentioned David A. Pearce, president of research at Sanford Health. “In order to fulfill this purpose, we have to maintain our foot on the fuel and proceed to hunt out and supply medical trials and remedy choices for these with a rare situation so we will higher perceive how the disease impacts every affected person.”
A current research Pearce revealed with 4 different researchers, states that the IRDiRC can nonetheless attain its purpose of offering analysis and remedy choices to rare disease sufferers inside one yr of searching for medical consideration by 2027, given the challenges that arose through the pandemic.
At Sanford Health, the research workforce has its personal worldwide rare disease registry which screens the development of research into greater than 7,000 distinctive problems. The well being care system additionally has a devoted research workforce dedicated to rare ailments.
“Rare ailments are simply that, rare,” mentioned Pearce. “Each of those 7,000 ailments should be checked out below a microscope to find out the way it impacts the physique and what remedy choices can enhance a affected person’s high quality of life. We have made strides previously decade, however there may be far more research to be performed to make these rare ailments be on the forefront of medical research. I’m assured that the workforce at Sanford Health together with my companions at IRDiRC, will proceed to make extraordinary developments as we work to obtain approval for brand new remedy choices for these sufferers.”
Participants can enroll in Sanford’s affected person registry for rare ailments at no cost and share their well being story with researchers and clinicians all over the world. Once enrolled, contributors will obtain details about research that’s related to their situation.
For extra details about Sanford Research, go to Research.SanfordHealth.org.
About Sanford HealthSanford Health, one of many largest well being programs in the United States, is devoted to the built-in supply of well being care, genomic drugs, senior care and providers, international clinics, research and reasonably priced insurance coverage. Headquartered in Sioux Falls, South Dakota, the group consists of 46 hospitals, 1,500 physicians and greater than 200 Good Samaritan Society senior care places in 26 states and 10 nations. Learn extra about Sanford Health’s transformative work to enhance the human situation at sanfordhealth.org or Sanford Health News.
https://news.sanfordhealth.org/news-release/covid-19-pandemic-impacts-rare-disease-research/
