AT Family Research Network
Support our Research Team
Research is a key part of our work towards finding treatments and an eventual cure for AT, and you can use your experiences to help shape it. With you involved, we’ll make sure AT research is working towards what is most important for you and your families.
What is the AT Society doing?
We are setting up the AT Family Research Network. This is a virtual group of volunteers who will help shape research studies and clinical trials to focus on the outcomes that matter most to families, while reducing barriers to participation.
What will I have to do?
By joining the network, you can then actively contribute to the research process in some of the following ways:
– Being a participant in a study or trial
– Sharing your experiences of taking part in a study or clinical trial
– Joining research project focus groups
– Taking part in study surveys or interviews
– Reviewing information sent to research participants
– Co-designing research studies with researchers
– Assessing whether proposed research is practical from the perspective of someone affected by AT
– Providing feedback on research proposals and clinical trial design
– Reviewing lay (everyday language) summaries from research projects
– Helping to share research findings and how they are applied
– Contributing towards important decisions about the research we support
Opportunities will be shared with the Network as they arise, and members can choose which ones to participate in. This makes it a perfect fit for those who want to influence AT research while staying flexible around their own commitments. Attendance at a Network virtual meeting once or twice a year will be necessary too.
In the future, we will use this network as the first place to come to explore campaign needs for the adequate funding of rare disease research and treatments in the UK.
Why should I get involved?
Your voice matters. Involvement in AT research by people affected by AT is essential to ensure that AT research addresses the issues that matter most to our community. It also helps to make research ethical and inclusive, reflecting a diversity of perspectives.
How can I get involved?
Our opportunities are open to people who are 18 years and over, from all backgrounds across the UK. You do not need a background in science or healthcare to take part.
You do need to have, or have had, a personal experience of AT. This could mean you have AT yourself, are a carrier, or have a close family member or friend who is affected or has been affected. You should also be interested in research, comfortable sharing your views and open to listening to others.
To register your interest in joining the AT Family Research Network, please click here
If you have any queries, please contact [email protected]
If you need help to translate this page click here or contact our Support team on the email above.
