They want to find out what the effects are, how often they happen and what factors influence them. By doing this, they can ensure that future research and healthcare practices focus on outcomes that matter most to patients and their families.

The study will take place in several stages: Reviewing the existing evidence, analysing the data, predicting late effects and developing a pilot study.

Shahd Mobarak is looking for patients and carers with these conditions to be involved in the study and form part of the patient advisory body. If you interested in being part of this research or you have any further questions please contact her directly at: shahd.mobarak@doctors.org.uk.