Long term follow up in ADA-SCID

Long-term follow-up will be important even after successful treatment of ADA-SCID. The non-immune signs and symptoms of ADA-SCID, particularly developmental, behavioural and psychological effects, will need to be carefully
monitored and managed.

Genetic counselling is important for future family planning as both parents will usually carry a copy of the faulty gene and any subsequent children born will have a 1 in 4 chance of being affected. This risk is the same with every pregnancy.

Carrier testing for at-risk family members and prenatal testing for future pregnancies are available once the genetic mutation has been identified in the family. Please refer to PID UK’s booklet 'Genetic aspects of PID' for further information.

Reviewed February 2018