Help improve how genetic test results are delivered

Have you received a genetic or genomic test result, or do you work with people who have?

Lynch Syndrome UK is supporting a national NHS project exploring how genetic results and reports are communicated to patients and families.

If you have personally received a genetic or genomic test result, you are invited to share your experience through a short survey. Healthcare professionals, medical teams, charities and support organisations can also support the research by sharing the opportunity with people who are eligible to take part.

Why this project matters

Receiving a genetic result can be an important moment for an individual and their family.

For people being tested for Lynch syndrome, the result may have implications for their own healthcare and for relatives who could have inherited the same genetic change. This is why LSUK believes it is important that the experiences of people and families affected by Lynch syndrome are represented in work seeking to improve how results are delivered.

Experiences can vary considerably. The project team has heard from people who received their genomic results while driving, on the school run or at work.

The Improving the delivery of genetic results project aims to learn directly from people who have received genetic or genomic test results.

Share your experience

The project is led by the NHS South East Genomic Medicine Service.

The researchers want to hear about positive experiences, challenging experiences and everything in between. The survey gives people an opportunity to share their personal experience of receiving a genetic or genomic test result.

The more eligible people who respond, the more information the project team will have to inform its work to improve genomic reports and the way results are communicated to patients and families.

Who can complete the survey?

The survey is open to anyone who has personally received a genetic or genomic test result.

It is not limited to:

• people with Lynch syndrome

• results relating to inherited cancer risk

• people living in the South East of England.

Only people who have personally received a genetic or genomic test result should complete the survey. Healthcare professionals, charities, support organisations and family members should not respond on someone else’s behalf.

Help the project reach eligible participants

Are you a medical practitioner, genetics team, other healthcare professional, charity or organisation supporting people who have undergone genetic testing, if so you can support the project by sharing the survey with eligible patients, service users and communities.

Lynch Syndrome UK is helping to promote the project because we want people and families affected by Lynch syndrome to have the opportunity to contribute their experiences.

Complete the survey

Have you personally received a genetic or genomic test result? Take part in the survey using the link below:

Complete the Survey