(Sioux Falls, SD) – The CoRDS Registry at Sanford Research is now a member of the International Rare Disease Research Consortium (IRDiRC) and David Pearce, PhD, was chosen to have a seat on the executive committee. The invitation is a big step for Sanford Research because it allows us to improve research partnerships around the world, not just on the national level.
IRDiRC is an international group formed to work together across the globe in order to speed up research in the areas of rare disease. The CoRDS program was selected because of the work being done and the financial commitment to rare disease research.
“Being a part of this international consortium is an honor for Sanford Research. Because rare diseases do not impact a huge percentage of our population, they can be difficult to study and understand because the pool of volunteers is so small,” says Liz Donohue, who oversees CoRDS. “Work on rare diseases is being done around the world. Instead of working independently in silos we will now be able to pool our resources and make sure we’re heading forward in the same direction.”
The CoRDS Registry (Coordination of Rare Diseases at Sanford) is a national disease registry that includes all rare diseases. It is headquartered at Sanford Research in Sioux Falls, SD. It was established as an innovative way to accelerate rare disease research efforts. The goal of CoRDS is to work with patient advocacy organizations, health care providers, researchers and patients to send information to potential participants and create a resource that links scientists with potential candidates for research studies.
“I am excited and proud to represent Sanford on the executive committee of IRDiRC,” adds Dr. Pearce. “This means Sanford and CoRDS will have a stake in the decisions being made on the direction of rare disease research around the globe.”
The main goal of IRDiRC is to deliver 200 new therapies for rare diseases and diagnostic tools for most rare diseases by 2020.