disorders amenable to DNA analysis

Registers are particularly useful for disorders amenable to
DNA analysis in which advances of clinical importance are
likely to improve future genetic testing and where families will
need to be updated with new information. Disorders suited to a
register approach include dominant disorders with late onset
such as Huntington disease and myotonic dystrophy where
pre-symptomatic diagnosis may be requested by some family
members or health surveillance is needed by affected
individuals; X linked disorders such as Duchenne and Becker
muscular dystrophy where carrier testing is offered to female
relatives, and chromosomal translocations where relatives
benefit from carrier testing. Registers can also provide data on
the incidence and natural course of disease as well as being
used to monitor the provision and effectiveness of services.
Genetic register information is held on computer and is subject
to the Data Protection Act. No one has his/her details included
on a register without giving informed consent.