Sources of information for parents of children with chromosome disorders

Hello!

We would like to invite parents and guardians of children with chromosome disorders to complete a questionnaire about their experiences.

Who are we?

We are a team of researchers from Cardiff University's ECHO Study. The ECHO study aims to find out more about the experiences of children with chromosome disorders. You can find out more about us here: http://medicine.cardiff.ac.uk/psychological-medicine-neuroscience/areas-research/copy-number-variant-research/research-projects/

What is a chromosome disorder?

Every individual's genetic material is different. Even closely related people will have some genetic differences. Rare chromosome disorders arise when there is extra (duplicated) or missing (deleted) chromosome material (DNA). When the chromosome change is tiny, these are often described as Copy Number Variants, CNVs for short.

Do I have to take part?

No. Participation is voluntary.

What will I need to do?

With your help we would like you to answer questions online about:

1. How you have found out about your child's chromosome condition.
2. Your experiences of services (for example, the medical genetics service)
3. How you think the services you received could be improved.

What about confidentiality?

All the information you share is confidential and you can stop the questionnaire at any time. All of the information is stored anonymously and securely. No one will read your replies except the research team.

What will happen to the results of the study?

Results will be written up to help doctors, nurses and other professionals involved in the care of children with chromosome disorders and their families. Participants will never be identified in any report or publication.

Contact

If you would like more information about the study or help with any of the questions, please contact Aimée on 02920 688 358 or echo@cardiff.ac.uk