To evaluate the success of a novel approach to twin studies using death discordant twin pairs in a disease of low prevalence.
A population study based on all registered deaths at the Office of Population Censuses and Surveys of England and Wales, classified under the ICD code 335.2 (motor neuron disease [MND]) for the period 1979-1989 inclusive.
From the above database of 10 872 people, individuals born after 31 December 1899 were traced in the Birth Indices for England & Wales to enable identification of possible twins.
In all 131 twin pairs were found and the co-twin details were sent to the National Health Service Central Register (NHS-CR) to enable location of the relevant Family Health Services Authority and thence the co-twin's general practitioner (GP).
A letter requesting access was sent to the family practitioners.
If given, the co-twin can be approached and interviewed.
The search produced :
54 living co-twins ;
31 who died as adults ;
29 infant deaths ;
5 emigrated ;
3 incorrectly diagnosed index twins ;
and 9 untraceable co-twins.
Among the adult deaths two concordant pairs were identified.
This new twin study method is clearly viable, and has produced a large unbiased sample compared to that possible using traditional methods.
It relies heavily on the accuracy of death certificates and zygosity reporting by living co-twins, but is possibly the only way of collecting twins in rare conditions.
Mots-clés Pascal : Neurone moteur maladie, Homme, Jumeau, Epidémiologie, Méthodologie, Mortalité, Echantillonnage, Royaume Uni, Europe, Système nerveux pathologie, Système nerveux central pathologie, Moelle épinière pathologie, Maladie dégénérative
Mots-clés Pascal anglais : Motor neuron disease, Human, Twin, Epidemiology, Methodology, Mortality, Sampling, United Kingdom, Europe, Nervous system diseases, Central nervous system disease, Spinal cord disease, Degenerative disease
Notice produite par :
Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 95-0472576
Code Inist : 002B30A01A1. Création : 01/03/1996.