Common data elements for neurological registries.

core data fields to include in all neurological registries in Canada. This project targeted neurological registries in Canada for all priority neurological conditions identified in the call for proposal including: Alzheimer’s disease (AD) and other dementias, amyotrophic lateral sclerosis (ALS), brain tumours, cerebral palsy (CP), dystonia, epilepsy, Huntington’s disease (HD), hydrocephalus, multiple sclerosis (MS), muscular dystrophy (MD), Parkinson’s disease (PD), spina bifida, spinal cord injuries (SCI), Tourette syndrome and traumatic brain injury (TBI). The project team sought to identify all existing neurological condition registries in Canada to consult as stakeholders in this project. Disease experts from all of the above priority conditions were included in the process. Neurological registries represented in the project included: • The Canadian Cerebral Palsy Registry – a voluntary registry including children with CP across several jurisdictions in Canada. (Edmonton, Alberta). • The Canadian Neuromuscular Disease Registry (CNDR) – a voluntary registry which includes MD, ALS and all other adults and children with neuromuscular disease in Canada (Calgary, Alberta, www.cndr.org) • Hydrocephalus Registry (under development) • The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry a voluntary online registry for patients worldwide with MS (Birmingham, Alabama, www.narcoms.org) • The Ontario Stroke Registry – formerly known as the Registry of the Canadian Stroke Network, a mandatory registry under Ontario’s Personal Health Information Protection Act (PHIPA) based at the Institute for Clinical Evaluative Sciences (ICES) in Toronto, Ontario. http://www.ices.on.ca/webpage .cfm?site_id=1&org_id=26&morg_id=0&gsec_id=7071&item_ id=7071 • The Quebec Myotonic Dystrophy Registry – a voluntary registry for Quebec patients with myotonic dystrophy (a form of MD) (Quebec, Quebec http://www.dystrophiemyotonique.chuq. qc.ca/ENG/registry-why.html) • The Rick Hansen Spinal Cord Injury Registry (RHSCIR) – a voluntary registry which includes individuals with SCI from across Canada (Vancouver, British Columbia, www.rickhansen registry.org)