A genetic register system (RAPID)

Justification is given for establishing a genetic register system as a means of ascertaining and preventing genetic disease. Such a computerized register system, referred to by the acronym `RAPID9 ( R egister for A scertainment and P revention of I nherited D isease), has been established in Edinburgh. The system involves ascertaining individuals in the population at risk of having a child with a serious genetic disorder through various record systems and statutory registers. Procedures for contacting and following up individuals found to be at risk are discussed. Computer methods for the recording, storage, and retrieval of individual and family data are described. Because of population mobility and the geographical dispersal of family members a Genetic Register System is more likely to be effective if organized on a national basis and the authors would therefore welcome the collaboration of other geneticists in this venture.