GGC Continues Partnership With IRSF In New Network To Expand Access To Best-in-class Rett Syndrome Care
Greenwood Genetic Center (GGC) is one of 15 institutions across the U.S. being honored today with the International Rett Syndrome Foundation (IRSF)’s Center of Excellence designation or redesignation. The award recognizes GGC’s continued dedication to providing best-in-class clinical care for Rett syndrome, a rare neurological and developmental disorder. It comes with funding support from IRSF and membership in IRSF’s Center of Excellence Network formed by the appointed clinics.
“We are honored to be able to enroll our Center in IRSF’s network,” says Steve Skinner, MD, GGC Director who leads GGC’s clinical research efforts for Rett syndrome. “We pledge to continue our efforts to provide outstanding care for children and adults with Rett syndrome as well as their families. We are committed to maintaining the high standards of care that define a Center of Excellence.”
To qualify as a Center Of Excellence, clinics had to complete an application demonstrating how they met the following requirements established by IRSF’s Medical Advisory Board.
- A physician director with expertise in Rett syndrome care
- Health care services that meet the unique needs of individuals with Rett syndrome
- Involvement in clinical trials
- Increase understanding of Rett syndrome by contributing to a clinical registry
The two-year designation will officially go into effect on June 1, 2021.
“This network is part of IRSF’s goal to get families the expert Rett clinical care that their loved ones need to thrive,” says IRSF CEO Melissa Kennedy, “Our goal is that the vast majority of families living with Rett syndrome have access to a Rett syndrome expert by 2024.”
Currently, many families must travel for an entire day to visit a physician who is knowledgeable about Rett syndrome. GGC’s involvement in the Center of Excellence network helps mitigate this situation. Its recognition as a leader in Rett syndrome care will make it the go-to clinic for local families as well as help to educate other physicians about Rett syndrome care.
There are no approved treatments for Rett syndrome, and the network’s clinical trial research will play an essential role in ensuring therapeutic development progresses as quickly as possible.
“The infrastructure created by our Center of Excellence partners allows us to aggressively engage in clinical research,” says IRSF CSO Dominique Pichard, MD, “This is the only way to make treatment options and curative therapies a reality for ALL families living with Rett syndrome.”
Photo: Mackenzie Noecker is surrounded by her GGC Rett syndrome care team at a recent clinical trial visit.
About International Rett Syndrome Foundation:
The International Rett Syndrome Foundation (IRSF) is the leading research and empowerment organization for Rett syndrome. Investing over $51 million in research that has advanced therapeutics to clinical trials, including Rett syndrome’s first-ever phase 3 clinical trial. IRSF’s vision is to create a world without Rett syndrome and we are reaching that vision through developing a robust pipeline of treatments and empowering families with information, knowledge, and connectivity. Further information can be found at: www.rettsyndrome.org