Case study: Taking part in haemophilia research: Eloise's story

A mother whose son has taken part in a study for 10 years said that she “doesn’t know what his life would be like” if he hadn’t taken part in a trial into the effects of a drug for children with haemophilia B. 

Eloise Clark’s son Jacob joined a haemophilia study in 2013 aged 5. The study assesses a blood clotting drug as a preventative treatment for life-threatening bleeds in children.

Haemophilia B is a blood clotting disorder where injured blood vessels cannot heal normally. This can result in bleeds inside the body as well as from the skin. Bleeds can be fatal if they are not stopped or occur in vital organs such as the brain.

Eloise, a teaching assistant for children with special needs, said: “When Jacob started primary school, his bleeds got worse and more frequent. He’d suffered 3 bleeds in 5 months, and it was then that the doctors suggested the trial to give him injections of the clotting factor that his body needs.”

The study, run at the John Radcliffe Hospital, offers participants a drug which is injected into a vein in the arm once a week instead of injections of a different clotting drug every 3 days, which is the standard care.

Eloise, of Aston Clinton, near Aylesbury, Buckinghamshire said: “The study had completely changed Jacob’s life and I don’t know what his life would be like if he wasn’t on it. He has broken his arm twice and didn’t need any additional treatment for bleeds. He hasn’t had any bleeds since he has been on the trial and can’t really remember what they are like.”

When the trial finishes in October, Jacob will be prescribed the drug.

Jacob, who recently completed his GCSEs at John Colet School in Wendover said: “I’m really grateful for all the care and treatment I’ve had from my haemophilia medical team. Being part of the trial has been a great experience. The treatment meant I could experience my childhood like any normal boy.”

Talk to your healthcare professional about taking part in research or search for studies seeking volunteers at Be Part of Research.