HSE Patient Feedback For National Genetics And Genomics Office

Hello,

The National Genetics and Genomics Office has asked Amárach Research to carry out a communications research project with patients who are referred to genetic and genomic services.

Aim: to better understand what patients and their families need to know to help them better navigate services.

Why? The knowledge gained will be used to work towards an improved patient experience of using genetic and genomic services.

We are looking to receive feedback from adult patients and parents or carers of children who have either:

i)    been diagnosed with or at risk of a ‘Rare Disease’ genetic condition (which includes those with an inherited cancer predisposition condition); or
ii)    experienced cancer not related to a cancer predisposition condition; or
iii)    previously accessed genetic and/or genomic testing in pregnancy.

and have a related experience of genetic testing.

If you are potentially interested in participating in this important study and speaking with Amárach Research about the information and communication re genetic testing in Ireland, please complete Amárach’s short survey, where further information will be provided.

Please note, your circumstances may or may not qualify for the study criteria.

If you would like any further information ahead of getting involved, please contact the National Genetics and Genomics Office at Genomics.Office@hse.ie where a member of the team will speak with you.

Thank you for your support.
Alison