Disease networks and study groups

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.

Ataxia

Ataxia Study Group
ASG
Friedreich's Ataxia Research Alliance USA

Dystonia

Dystonia Coalition
European Network for the Study of Dystonia Syndromes

Frontotemporal Dementia

The Advancing Research and Treatment for Frontotemporal Lobar Degeneration Consortium
The Genetic Frontotemporal Dementia Initiative

Genetic Parkinsonism

International Parkinson Disease Genomics Consortium

Heriditary Spastic Paraplegia

Alliance for Treatment in HSP and PLS
  • International network with the intention to further the development of trial readiness and therapies in HSP and PLS.
BRAIN-TEAM network
CanHSP
  • 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).
Clinical Research in ALS and Related Disorders for Therapeutic Development Consortium
  • 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.
German HSP Registry
Spastic Paraplegia Foundation, Inc
Website: SPF
Contact: Frank Davis
NeurOmics
SPATAX
UK HSP Registry

Huntington

European Huntington's Disease Network
HD Buzz

Leukodystrophies

Deustches Leukodystrophies Netzwerk

Multiple System Atrophy

Arbeitsgruppe Atypische Parkinson Syndrome
Autonomic Disorders Consortium
ADC
European Multiple System Atrophy Study Group
French Reference Centre for Multiple System Atrophy
MDS-sponsored Multiple System Atrophy Study Group

Progressive Supranuclear Palsy

Arbeitsgruppe Atypische Parkinson Syndrome
CBD Solutions
CBD Solutions (Corticobasal Degeneration)
MDS-sponsored Progressive Supranuclear Palsy Study Group