Study design: Implementation study. Objectives: 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. Setting: 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. Conclusion: 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. Spinal Cord (2014) 52, 611-615; doi:10.1038/sc.2014.57; published online 6 May 2014
INTRODUCTIONUpper limb reconstructive surgical procedures for individuals with tetraplegia were first described by Moberg 1 in the early 1970s and have since been adopted in many centers worldwide. 2,3 These procedures apply to a very specific group of persons with tetraplegia, usually with injuries at the spinal levels of C4 to C7, with explicit components of motor and sensory loss, 3 as assessed for suitability for surgery by clinician experts on the basis of available donor muscles. 4 Despite reports of positive results, 2,3 the effects of these interventions in comparison with more conventional rehabilitation have not yet been studied using comprehensive and comparative designs. Moreover, most studies were small and used a vast array of outcome measures, allowing little possibility for comparison between studies. 5 Consequently, knowledge about the effects of these interventions on levels of activities, participation and quality of life is largely lacking.Clinical data routinely collected in hand surgery centers is also largely unavailable, because data collection was frequently incomplete, measures collected at variable time points and clinical examinations were largely subjective with poor reproducability, and did not necessarily use internationally agreed upon classifications. 5 In addition, where mea...