Laterality,gender and age differences in estimated frequency and actual registration of people with congenital upper limb absences

Initial analyses from a survey of people with unilateral upper limb congenital absence registered with the Cambridge Disablement Services Centre (DSC) indicated differences related to laterality and gender. A postal survey of all DSCs in the UK was conducted and support for these findings was provided from the analysis of the information supplied by the 25 DSCs who could provide data in the format requested. Comparing statistics for the UK population with those gained from the 25 DSCs, estimates for the number of children and adults who should be registered with DSCs in the UK are made. From these figures it is suggested that the non-registration rate for adults with a congenital absence of an upper limb could be as high as 64%.