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Understanding the views of people affected by Ataxia-Telangiectasia on the use of MRI screening to detect cancer

We are supporting a Research Project that is being conducted by Prof Rob Dineen (who we have worked closely with for many years) ([email protected], Ethics Reference Number: 2787) and his team, Renata Neves ([email protected] ,Supervisor/Chief Investigator).

This study is being run by researchers at the University of Nottingham and doctors at the Nottingham University Hospitals NHS. The study has been approved by a sub-committee of the Faculty of Medicine & Health Sciences (FMHS) Research Ethics Committee.

The study involves taking part in a small, online group discussion or, if preferred, an online interview, that can last for 1h. Please note this is an online study only at this stage and you or your child do NOT have to take part in an MRI Scan.

After the full Study, Dr Rob Dineen and his team are hoping to establish the following:

  • Whether MRI scans are acceptable to the children and young people with A-T and their families
  • Whether having the MRI scan and blood test causes any additional stress for the people who take part
  • Whether the MRI scan and blood test are able to find hidden cancers

The team would like to know the views of families affected by A-T, including parents and carers of children with A-T, young people with A-T and parents who have been through the experience of having a child diagnosed with and treated for cancer.

We would ask as many families as possible to participate –  please contact Rob and his team directly via email [email protected] – to register your interest.

One of the researchers will then contact you with more information and to explain the next steps. Any personal details you provide are strictly confidential and will not be passed on to any third party.

Thank you for considering this and helping to participate in research for A-T.