- GENFI (Europe/Canada): genfi.org.uk
- ARTFL (USA): www.rarediseasesnetwork.org/cms/ARTFL
- LEFFTDS (USA): www.nia.nih.gov/alzheimers/clinical-trials/longitudinal-evaluation-familial-frontotemporal-dementia-lefftds
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
- SPATAX spatax.wordpress.com
- German HSP Registry www.dzne.de/forschung/forschungsbereiche/klinische-forschung/studien/hsp-net-tb001.html
- The German HSP Registry (R. Schüle, L. Schöls) was started in 2004 through funding of the German Ministry for Research and Education (GeNeMove network, BMBF) and receives input from clinical sites all over Germany. It is currently jointly funded by the HSP patient organization ‘HSP Selbsthilfegruppe Deutschland’ and the German Center for Neurodegenerative Diseases (DZNE). Participating sites have harmonized standards of diagnosis and clinical examination across the network and have developed the Spastic Paraplegia Rating Scale (SPRS), a clinical rating scale to measure disease severity in HSP .
- CReATe Clinical Research in ALS and Related Disorders for Therapeutic Development Consortium 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
- CReATe Clinical Research in ALS and Related Disorders for Therapeutic Development Consortium is a Rare Diseases Clinical Research Consortium (RDCRC) that forms part of the NIH’s Rare Diseases Clinical Research Network (RDCRN) (www.rarediseasesnetwork.org). 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
- CanHSP is 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).
- The UK HSP Registry was started in 2014 but the specialist HSP clinic has been collecting clinical data and DNA since 1980 when Anita Harding established the department. It has established diagnosis and clinical examination and use the SPRS rating scale as part of the NHS practice.
- NeurOmics rd-neuromics.eu
- BRAIN-TEAM network: National French Network for Rare Neurological diseases including 9 certified centres of reference, 25 specialized centers, 25 competent centres, >260 CNS diseases, 37 patient associations, and ~100,000 patients (website under development).
Multiple System Atrophy
- European MSA Study Group www.emsa-sg.org/
- MDS-sponsored Multiple System Atrophy Study Group www.movementdisorders.org/MDS/About/Committees--Other-Groups/Study-Groups/Multiple-System-Atrophy.htm
- French reference centre for MSA www.chu-toulouse.fr/-centre-de-reference-de-l-atrophie-multisystematisee-
- German Parkinson Society parkinson-gesellschaft.de/die-dpg/arbeitsgruppen/10-parkinson-forschung/10-arbeitsgruppe-psp-und-andere-atypische-parkinson-syndrome.html
- Autonomic and rare disease consortium www.rarediseasesnetwork.org/ARDCRC/
Progressive Supranuclear Palsy
- MDS-sponsored Progressive Supranuclear Palsy Study Group