Could you or a young person you know help shape FH (familial hypercholesterolaemia) care for the future?
Could you or a young person you know help shape FH (familial hypercholesterolaemia) care for the future?
Nottingham University are looking for young people with FH to help design important research by joining our Children & Young People’s Advisory Group. The research aims to identify when young people with FH should start taking medication to lower their cholesterol to give them the best chance of good cholesterol control and good health for life.
How you or a young person you know can help
We are looking for young people aged 12 to 18 with FH from across the UK to join our advisory group.
Members of the group will be paid £20 per hour for attending online meetings about twice a year. Meetings will last one to two hours. Members are also welcome to an annual social event decided by the group (such as LaserQuest or paintball). Travel, meals, and accommodation will be paid for.
Members are not obliged to attend all meetings and do not have to commit to a minimum time to be part of the group.
Who to contact if you’re interested
If you are interested or would like further information, please email Jessica Rose at: paedsfh@nottingham.ac.uk
What questions does this research aim to answer?
To prevent future heart disease, it is recommended that people with FH use cholesterol-lowering medication, usually statins, by the age of 10, but there are unanswered questions around when to start treatment. Such as:
- Is 10 years old the best age or should people start treatment earlier or later?
- At what cholesterol level should treatment start?
- How can we avoid potential side effects?
- How can we provide medical care and treatments that are acceptable for children and young people and their families?
- How can we provide the best value for money for the health service?
How will we answer these questions?
We will use information from the Paediatric FH Register (a big database of health records) and collect information directly from young people and their families using questionnaires and interviews.
We will find out the costs of starting cholesterol-lowering medication and how often children and young people are seen by doctors and nurses.
Using these findings and information on how cholesterol affects the risk of heart disease later on, we can work out the value of starting treatment at different ages and cholesterol levels.