SCID - future prospects

Continuing developments and improvements are transforming the lives of children with SCID. Advances in diagnostic techniques and genetic technology, improved treatments and better medications enable many children with SCID to proceed
through stem cell transplant safely. It is likely that gene therapy will continue to develop and become applicable to more types of SCID.

Genetic counselling

In many cases, the genetic mistake causing SCID can now be identified. This means that accurate genetic counselling is available for the immediate and extended family, and that prenatal diagnosis is possible for future pregnancies.

Referral to local genetic counselling services can be arranged, and in some situations a joint counselling appointment with a genetics specialist and an immunologist can be helpful. More information about the genetic aspects of
primary immunodeficiency can be found here.

Newborn screening for SCID

Unless there is a previous family history of SCID, most infants with SCID are only
diagnosed after problems with serious infection occur. Early diagnosis of SCID has been shown to significantly improve survival (to over 90 per cent). This is because infants diagnosed soon after birth can be started on preventative medications and other measures taken to prevent serious infections from very early on. Much work is being undertaken towards introducing newborn screening for SCID worldwide, and several countries now have established screening programmes for SCID. This is not currently available in the UK. However, we continue to work closely with the UK National Screening Committee (UKNSC) and are hopeful that a national screening programme for SCID will be approved in the UK soon.

Reviewed April 2017