The HSE’s National Genetics and Genomics Office has partnered with Amárach Research to carry out a communications research project aimed at better understanding what patients who are referred to genetic and genomic services, and their families, need to know to help them better navigate services.
The knowledge gained will be used to work towards an improved patient experience of using genetic and genomic services.
The research team is now seeking input from people who have experience of genetic testing in Ireland.
This will involve a series of focus groups and interviews. The discussions and experiences shared in these groups and interviews will help to determine the communications needs of patients and inform the development of communications materials to address those needs.
Why get involved?
From an epilepsy perspective, genetic testing is becoming more common and there are people living with certain types of epilepsy in Ireland who may be well placed to help this important research by sharing their experiences of genetic services.
It is important that the perspective of the epilepsy community is included in this work, and doing so will help to improve the experience of other people with epilepsy accessing genetic/ genomic services in future.
Who can get involved?
If you meet any of the following criteria, the research team would love to hear from you:
- You have been diagnosed with or at risk of a ‘Rare Disease’ genetic condition (including a genetic form or epilepsy or epilepsy syndrome);
- You have experienced cancer not related to a cancer predisposition condition;
- You have previously accessed genetic and/ or genomic testing in pregnancy.
Both adults and parents/carers of children can contribute to the study.
How to get involved
If you are potentially interested in participating in this study and speaking with Amárach Research about your experience of genetic testing in Ireland, please complete the short survey at the button below.
All data provided will be processed in accordance with GDPR.
If you are eligible for the study and following mutual agreement, Amarach will arrange to meet with you during the coming weeks, to interview you and/or ask you to take part in a focus group discussion with others who may have similar circumstances and experiences.
If you would like any further information ahead of completing the survey, please contact:
- Alison Flannery, Research Director, Amárach Research - alison.flannery@amarach.com
- The National Genetics and Genomics Office Genomics.Office@hse.ie - a member of the team will speak with you.