COVID-19 pandemic impacts rare disease research
March 28, 2022
Contact:
Jon Berg
Sanford Health Media Relations
605-366-2432 / Jon.Berg@sanfordhealth.org
SIOUX FALLS, S.D. — One in 10 people in the world are living with a rare disease, affecting as many as 400 million people worldwide. During the COVID-19 pandemic, some rare disease patients experienced challenges in obtaining a diagnosis and treatment options to manage their condition. Currently, less than six percent of rare diseases have an approved treatment.
David A. Pearce, PhD, president of research at Sanford Health, was recently named Chair of the International Rare Disease Research Consortium (IRDiRC). As Chair of the IRDiRC, Dr. Pearce, along with a group of 59 other organizations from across the world, have a primary focus to re-engage rare disease research across the world.
“The goal set out by the IRDiRC is that, by 2027, we intend to provide diagnosis and treatment options to rare disease patients within one year of them seeking medical attention for their condition,” said David A. Pearce, president of research at Sanford Health. “In order to meet this goal, we need to keep our foot on the gas and continue to seek out and offer clinical trials and therapy options for those with a rare condition so we can better understand how the disease affects each patient.”
A recent study Pearce published with four other researchers, states that the IRDiRC can still reach its goal of providing diagnosis and treatment options to rare disease patients within one year of seeking medical attention by 2027, given the challenges that arose during the pandemic.
At Sanford Health, the research team has its own international rare disease registry which monitors the advancement of research into more than 7,000 unique disorders. The health care system also has a dedicated research team devoted to rare diseases.
“Rare diseases are just that, rare,” said Pearce. “Each of these 7,000 diseases need to be looked at under a microscope to determine how it affects the body and what treatment options can improve a patient’s quality of life. We have made strides in the past decade, but there is much more research to be done to make these rare diseases be at the forefront of medical research. I am confident that the team at Sanford Health along with my partners at IRDiRC, will continue to make extraordinary advancements as we work to receive approval for new therapy options for these patients.”
Participants can enroll in Sanford’s patient registry for rare diseases for free and share their health story with researchers and clinicians around the world. Once enrolled, participants will receive information about research that is relevant to their condition.
For more information about Sanford Research, visit Research.SanfordHealth.org.
About Sanford Health
Sanford Health, one of the largest health systems in the United States, is dedicated to the integrated delivery of health care, genomic medicine, senior care and services, global clinics, research and affordable insurance. Headquartered in Sioux Falls, South Dakota, the organization includes 46 hospitals, 1,500 physicians and more than 200 Good Samaritan Society senior care locations in 26 states and 10 countries. Learn more about Sanford Health’s transformative work to improve the human condition at sanfordhealth.org or Sanford Health News.
