After screening blood spot cards are stored for at least 5 years and may be used:
to check the result or for other tests recommended by your doctor
to improve the screening programme
for research to help improve the health of babies and their families in the UK (this will not identify your baby and you will not be contacted)
In addition, there is a small chance that researchers may want to invite you or your child to take part in information gathering linked to the newborn blood spot screening programme. Researchers undertaking any additional studies would explain what is being done and you would then be asked if you wish to take part in that study. Please let your midwife know if you do not want to be contacted to discuss taking part in any additional information gathering. All use of the blood spots is governed by the code of practice. Any research will have been approved by an independent research ethics committee.
Find more information and details of support groups on NHS.UK.