title: The development of the NZ-based international upper limb surgery registry.
abstract: METHODS
  Implementation study.
  
  
  OBJECTIVE
  To describe the development and potential value of the New Zealand (NZ) upper limb surgery registry and report the demographic and spinal cord injury characteristics of individuals with tetraplegia collated to date.
  
  
  METHODS
  Multi Center-coordinated from Burwood Spinal Unit, NZ.
  
  
  METHODS
  Following discussions with eight international units, clinical information and outcomes measures were agreed upon for use in this specific population. To implement this consensus, a web-based upper limb surgery registry was developed in NZ. Inclusion criteria included referral to a hand clinic for clinical assessment for suitability for tendon transfer surgery. Clinical data were collected regardless of acceptance of surgery thereby creating a self-selected control group. Twenty-eight years of retrospective NZ data was entered into the registry, as well as 3 years of prospective data collected in NZ.
  
  
  RESULTS
  From 1982 to 2013, a total of 357 persons with tetraplegia were assessed as suitable for surgery. Of those, 223 individuals underwent surgery and 134 declined the intervention(s). The prospective group currently comprises 55 assessments with 23 surgery individuals and 32 who have declined surgery to date.
  
  
  CONCLUSIONS
  Clinical information is now available within a web-based registry for all individuals reviewed in hand clinics from when upper limb surgery was first introduced. A broad range of outcomes of interest can easily be reported directly from the registry. The self-selected control group will allow comparative studies to be explicitly linked to the specific interventions of interest.
authors.affiliation: 1] Department of Orthopaedic Surgery and Musculoskeletal Medicine, University of Otago, Christchurch, New Zealand [2] Burwood Academy of Independent Living (BAIL), Christchurch, New Zealand [3] Burwood Spinal Unit, Canterbury District Health Board, Christchurch, New Zealand.
authors.forename: K A
authors.initials: KA
authors.lastname: Sinnott
authors.affiliation: 1] Department of Orthopaedic Surgery and Musculoskeletal Medicine, University of Otago, Christchurch, New Zealand [2] Burwood Spinal Unit, Canterbury District Health Board, Christchurch, New Zealand.
authors.forename: J A
authors.initials: JA
authors.lastname: Dunn
authors.affiliation: 1] Department of Orthopaedic Surgery and Musculoskeletal Medicine, University of Otago, Christchurch, New Zealand [2] Burwood Spinal Unit, Canterbury District Health Board, Christchurch, New Zealand.
authors.forename: A G
authors.initials: AG
authors.lastname: Rothwell
authors.affiliation: New Zealand Spinal Trust, Christchurch, New Zealand.
authors.forename: A S
authors.initials: AS
authors.lastname: Hall
authors.affiliation: Brain Center Rudolf Magnus and Center of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and Rehabilitation Center De Hoogstraat, Utrecht, The Netherlands.
authors.forename: M W M
authors.initials: MW
authors.lastname: Post
mesh_terms: D000328:Adult; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009520:New Zealand; D009862:Online Systems; D017063:Outcome Assessment, Health Care; D011782:Quadriplegia / Q000209:etiology* / Q000601:surgery*; D012042:Registries / Q000706:statistics & numerical data; D012189:Retrospective Studies; D013119:Spinal Cord Injuries / Q000150:complications* / Q000601:surgery; D013709:Tendon Transfer / Q000379:methods*; D034941:Upper Extremity / Q000601:surgery*