title: The CNDR: collaborating to translate new therapies for Canadians.
abstract: BACKGROUND
  Patient registries represent an important method of organizing "real world" patient information for clinical and research purposes. Registries can facilitate clinical trial planning and recruitment and are particularly useful in this regard for uncommon and rare diseases. Neuromuscular diseases (NMDs) are individually rare but in aggregate have a significant prevalence. In Canada, information on NMDs is lacking. Barriers to performing Canadian multicentre NMD research exist which can be overcome by a comprehensive and collaborative NMD registry.
  
  
  METHODS
  We describe the objectives, design, feasibility and initial recruitment results for the Canadian Neuromuscular Disease Registry (CNDR).
  
  
  RESULTS
  The CNDR is a clinic-based registry which launched nationally in June 2011, incorporates paediatric and adult neuromuscular clinics in British Columbia, Alberta, Ontario, Quebec, New Brunswick and Nova Scotia and, as of December 2012, has recruited 1161 patients from 12 provinces and territories. Complete medical datasets have been captured on 460 "index disease" patients. Another 618 "non-index" patients have been recruited with capture of physician-confirmed diagnosis and contact information. We have demonstrated the feasibility of blended clinic and central office-based recruitment. "Index disease" patients recruited at the time of writing include 253 with Duchenne and Becker muscular dystrophy, 161 with myotonic dystrophy, and 71 with ALS.
  
  
  CONCLUSIONS
  The CNDR is a new nationwide registry of patients with NMDs that represents an important advance in Canadian neuromuscular disease research capacity. It provides an innovative platform for organizing patient information to facilitate clinical research and to expedite translation of recent laboratory findings into human studies.
authors: Canadian Neuromuscular Disease Registry Investigator Network.
authors: Lawrence
authors: L
authors: Korngut
authors: Craig
authors: C
authors: Campbell
authors: Megan
authors: M
authors: Johnston
authors: Timothy
authors: T
authors: Benstead
authors: Angela
authors: A
authors: Genge
authors: Alex
authors: A
authors: Mackenzie
authors: Anna
authors: A
authors: McCormick
authors: Douglas
authors: D
authors: Biggar
authors: Pierre
authors: P
authors: Bourque
authors: Hannah
authors: H
authors: Briemberg
authors: Colleen
authors: C
authors: O'Connell
authors: Suzan
authors: S
authors: Dojeiji
authors: Joseph
authors: J
authors: Dooley
authors: Ian
authors: I
authors: Grant
authors: Gillian
authors: G
authors: Hogan
authors: Wendy
authors: W
authors: Johnston
authors: Sanjay
authors: S
authors: Kalra
authors: Hans D
authors: HD
authors: Katzberg
authors: Jean K
authors: JK
authors: Mah
authors: Laura
authors: L
authors: McAdam
authors: Hugh J
authors: HJ
authors: McMillan
authors: Michel
authors: M
authors: Melanson
authors: Kathryn
authors: K
authors: Selby
authors: Christen
authors: C
authors: Shoesmith
authors: Garth
authors: G
authors: Smith
authors: Shannon L
authors: SL
authors: Venance
authors: Joy
authors: J
authors: Wee
mesh_terms: D000293:Adolescent; D000328:Adult; D002170:Canada / Q000453:epidemiology; D002648:Child; D002675:Child, Preschool; D003299:Cooperative Behavior; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D009468:Neuromuscular Diseases / Q000145:classification / Q000453:epidemiology* / Q000628:therapy*; D011159:Population Surveillance; D012042:Registries; D012189:Retrospective Studies; D057170:Translational Research, Biomedical; D055815:Young Adult