We have been asked to share details of some new research being undertake by Emma Carter, a Genetic Counselling student at Cardiff University. The research is Exploring whether the UK Genetic Services meet the support seeds of families affected by developmental disorders and Emma is looking for Unique member families who might like to take part. She writes:

The research question is “What perceptions do families affected by developmental disorders have, regarding whether their support needs were met by the UK genetic services?”. The project aims to explore patient perceptions by using semi-structured interviews. This will enable the student researcher to understand whether there is a gap in support for families affected by developmental disorders, whether this gap could be addressed by the genetics service, and to explore who is most in need of additional support. 

There will be no payment or other direct benefits for taking part in this study, however by participating you will help us understand the support needs of families affected by developmental disorders which in turn may help the genetics department address these and direct their services to those most in need. 

Participation in this study is voluntary. Please click here to read the participant information sheet and click here to download the consent form. If you would like to take part, please return a completed consent form to the student researcher Emma Carter (cartere9@cardiff.ac.uk). Please also contact Emma Carter via this email if you have any queries or concerns you would like answering before signing the consent form. After this, an interview will be arranged with the student researcher which will last approximately 40 minutes. Your data will be anonymised and any identifiable information will be kept confidential.

Emma Carter