Patients at the Heart
At Alder Hey, we believe every child should have an opportunity to participate in clinical research.
Our patients and their families are encouraged to become actively involved in different areas of research. Last year, over 4,000 children and young people took part in clinical research studies at Alder Hey, more than at any other children’s healthcare provider in the UK.
You can get involved in research in various ways, from helping us to identify research topics to providing input to our research team or participating in a clinical study.
The NIHR Children’s Specialty is hosted at Alder Hey and they have dedicated staff who look after patients and families involved in research. They have set up a Young Person’s Advisory Group (YPAG) to work in partnership with researchers to design and develop studies that meet the needs of children and young people.
Membership of YPAG is open to anyone between the ages of 8 and 18 years old. Members of the group either have some knowledge of taking medication, are involved in a clinical trial, have experience of using hospital services or have a personal ambition to study medicine.
For further details of the group and how to get involved visit the Generation R website.
Alfred Middleton has lived with severe asthma since birth. On average there are three children with asthma in every classroom in the UK. Many people underestimate how serious the condition is.
Mum Sallyanne explains how Alfred is helping Alder Hey doctors to treat children with this condition by taking part in a research trial.
“Living with asthma is often hard for Alfred. He can find it difficult to exercise or socialise with his friends and his younger brother Adam. His asthma can be triggered by coming into contact with pets, cut grass and dust. His chest can get tight and he can have trouble sleeping at night,” mum Sallyanne says.
“In addition to his severe asthma, Alfred also has eosinophilic esophagitis which is an allergy and immune based condition and means he is unable to eat without the help of a tube. When the research team at Alder Hey approached us to participate in a research study, we jumped at the chance.
“The doctors at Alder Hey took the time to explain about the trial and what it entailed. They told Alfred that the study was taking part in two sections and that at any time he would be able to pull out if he wasn’t comfortable continuing, but he’s already signed up to the second part. Alfred is very clued up on his health.
“Alfred’s condition stops him from visiting friends and family so as a family we’re hoping the research study can help find a solution. We’re hoping that the study helps towards reducing the amount of steroids and other medications Alfred has to take. We’re just thankful that there’s a research study at Alder Hey which could help us to take a step closer in improving my son’s quality of life.”
Despite many setbacks, Alfred is a happy and kind boy who is always looking on the bright side of life. “I’m really hoping it helps me,” he says. “But if it doesn’t, it might help other kids.”