Useful links.
A curated directory of research databases, trial registries, patient organisations, and community resources for CANVAS syndrome.
Research & journals
PubMed — RFC1 / CANVAS
The US National Library of Medicine's database of peer-reviewed biomedical literature. Search results filtered to RFC1 and CANVAS syndrome.
Visit →Europe PMC
Open-access archive of life sciences research including preprints, conference papers and grey literature not always found on PubMed.
Visit →Cochrane Library
Systematic reviews and meta-analyses of clinical evidence. The gold standard for evaluating whether treatments actually work.
Visit →GeneReviews — RFC1-related ataxia
A clinical summary of RFC1-related CANVAS from the NCBI GeneReviews series — covering diagnosis, management, and genetic counselling.
Visit →OMIM — RFC1
Online Mendelian Inheritance in Man. The authoritative catalogue of human genes and genetic disorders — RFC1 gene entry with full clinical and molecular detail.
Visit →Orphanet — CANVAS syndrome
The European rare disease database. Covers prevalence, diagnostic criteria, and links to specialist centres.
Visit →Clinical trials
ClinicalTrials.gov — CANVAS
The US registry of clinical studies worldwide, including trials in Australia, France, Italy, and the UK. The most comprehensive single source for active trials.
Visit →ISRCTN Registry
The UK's primary clinical trial registry, managed by the BMJ. Focuses on UK and European studies.
Visit →WHO International Clinical Trials Registry Platform
A meta-registry that searches across 17 national and regional trial registries simultaneously. Useful for finding trials not listed on ClinicalTrials.gov.
Visit →NIHR — National Institute for Health Research
The UK government's health research funder. Covers funded projects, patient involvement in research, and how to take part in UK studies.
Visit →Patient organisations
Ataxia UK
The UK's leading ataxia charity. Offers information on CANVAS, specialist clinic referrals, research funding, welfare advice, and a dedicated support team.
Visit →Euro Ataxia
The European Federation of Hereditary Ataxias. Coordinates patient advocacy and research across European member organisations.
Visit →National Ataxia Foundation (NAF)
The main US ataxia patient organisation. Funds research, runs support groups, and publishes Generations magazine. Useful for US-based trials and resources.
Visit →Ataxia Australia
Australia's ataxia patient organisation — relevant given that RFC1/CANVAS research has strong Australian involvement (teams in Sydney and Melbourne).
Visit →Community
Ataxia UK — HealthUnlocked community
The peer support forum run by Ataxia UK. A good place to ask questions and read about lived experience from others with CANVAS and related conditions.
Visit →r/ataxia — Reddit
A Reddit community for people affected by ataxia of all types. Not CANVAS-specific, but active and candid — useful for day-to-day questions and shared experience.
Visit →