HNF would like to announce, with great pleasure, that it has been invited to participate in the Inherited Neuropathy Consortium (INC), one of 22 groups under the Rare Diseases Clinical Research Network (RDCRN), funded primarily by the NIH. The RDCRN was designed to encourage collaboration among scientists from multiple research sites and to include patient advocates to participate and serve as research partners. The network consortium also includes a training program for clinical investigators.
The INC is an integrated group of academic medical centers, patient support organizations, and clinical research resources whose primary purpose is to conduct research. If you are seeking patient care, however, these sites (some of which are HNF Centers of Excellence) also have the knowledge and resources to provide excellent patient care. Since inception in 2009, the INC has conducted research that has enrolled close to 8,000 patients as part of their natural history studies (where patients are followed over time clinically) for a better understanding of CMT.
Additionally, the INC has discovered new biomarkers and has developed special scales to help measure whether treatments are working in the day-to-day life of an individual, leading to deeper scientific understanding of the causes of CMT. It’s important for those patients that have been enrolled in the INC to put as much effort into visiting their admitting site each year to enhance the research program. These studies have forged the path today for industry to develop treatments for us.
To participate in the research, CLICK HERE
The more patients enrolled, the better it is for us!
Allison Moore, HNF CEO will represent HNF as a member of their Coalition of Patient Advocacy Groups (CPAG), which represents the perspective and interests of all patient advocacy organizations associated with the clinical research consortia. Through collaboration, patient advocacy groups and researchers can make faster progress toward new treatment options and cures, which can improve the lives of all persons and families affected by CMT.
“I personally am honored to be part of the consortium that has for sure had an impact on the development of the clinical trials today and for others in the pipeline,” says Allison. “As a representative I will serve our patient community and bring our collective voices to the consortium, as well as support all the consortium members.”
I want to extend a special thank you to Dr. Michael Shy, who is the principal investigator of the INC, for inviting HNF to be part of the consortium.