Article

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.

Langue : ANGLAIS