**UPDATE 31st October 2022: This research is now closed for recruitment**
One of our Information Officers at Unique, Francesca Wicks, is launching a new research project focusing on understanding the experiences of adults with brothers or sisters affected by rare chromosome or gene disorders. Francesca is doing this research as part of her dissertation in her Genetic Counselling Master’s Degree at Cardiff University. Recruitment to the study will primarily be through Unique and Francesca is hoping to interview between 10-15 people in total.
This brand new research study will focus on giving a voice to siblings directly and gathering information to help future genetic counsellors and healthcare professionals care for the entire family when a rare genetic diagnosis is made. Additionally, this research will help update our Unique guide ‘Supporting Siblings of Children with a Rare Chromosome Disorder’.
Can you or a family member help?
To take part in the research, individuals must be:
· Aged 18 or over
- Have a brother or sister diagnosed with a rare genetic condition affecting their development, learning and/or behaviour
- Be related by blood (biological siblings) to their affected brother or sister
- Able to take part in an interview (online, phone or face-to-face) and provide consent for themselves
Please pass on the information to anyone in your family who may be interested.
Adult siblings from all over the world can take part. We also know that some individuals diagnosed with rare genetic conditions may have very sadly passed away, bereaved siblings are very welcome to take part too.
To read Francesca’s research invitation please click here. Below, you will also find a link to an information sheet to find out more. If you are interested in taking part in Francesca’s research, you need to complete the consent form and short questionnaire, and email them to Francesca on WicksF1@cardiff.ac.uk Francesca will then get in touch to check if you are eligible and arrange an interview time.
Click here to read the Information Sheet about this research
For the Consent Form please click here
Click here to answer the short participant questionnaire
If you have any questions about this research or want to know more, please contact Francesca (pictured below) on WicksF1@cardiff.ac.uk