Treatment of X-SCID

The basic approach to looking after an infant with X-SCID is the same as for all
forms of SCID, as described in our information here.

In the UK there are two specialist centres in the country that provide definitive
treatment for children with SCID – Great Ormond Street Hospital (GOSH) in
London, and the Great North Children’s Hospital (GNCH) in Newcastle. Definitive
treatment begins when the child is referred to one of these centres. Initial
stabilisation and treatment under advice may begin in a referring specialist
children’s hospital or treatment centre.

When the time comes to discuss definitive (curative) treatment, there may be a
choice between haematopoietic stem cell transplant (HSCT) and gene therapy.
X-SCID is one of the small number of conditions for which clinical trials in gene
therapy have been successful. The decision regarding which treatment is best
will depend on the availability of well-matched donors for HSCT. This will require
extensive discussion with the transplant and gene therapy teams.

It can be helpful to meet another family who has a child with SCID and who has
undergone HSCT or gene therapy. Speak to your immunology team, who may be
able to arrange a meeting with a suitable family.

Reviewed October 2017