The listed disease networks and study groups are external networks and groups, which are leaders in the field of research for these disease groups. ERN-RND’s work is based on and complimentary to the work being done by these networks.
Heriditary Spastic Paraplegia
- International network with the intention to further the development of trial readiness and therapies in HSP and PLS.
- A nationwide research platform connecting physicians and scientists from various Universities and Hospitals across Canada. It was established in 2011 and is funded by the Canadian Institutes for Health Research (CIHR).
- CReATe is a Rare Diseases Clinical Research Consortium (RDCRC) that forms part of the NIH’s Rare Diseases Clinical Research Network (RDCRN). It includes an administrative unit, a network of clinical sites, a distributed genetics core, a training program and an outreach and advocacy core. CReATe aims to characterize the longitudinal/natural history phenotype of patients with genetically confirmed ALS, PLS, HSP and FTD.