Kent Haemophilia and Thrombosis Centre
Gillian.evans4@nhs.net
The Haemophilia Centre is committed to include research as part of everyday clinical care to improve the quality of care and deliver great healthcare for people with bleeding disorders. Rare disease studies often receive little attention due to small numbers of patients. Nevertheless, the Haemophilia Centre has achieved exceptional results for a small team, regularly recruiting 50-60 patients per year into international and national studies, on several occasions being the top recruiter in the UK. Our innovative programme includes interventional and observational studies, NIHR portfolio as well as commercially funded studies and international rare disease research databases. Our research portfolio is multi-disciplinary, with two-thirds of the multidisciplinary team (Haematologists, physiotherapists and nurses) Principal Investigators for CRN portfolio studies. We are currently leading several investigator initiated studies including: DOLPHIN, a NIHR funded multi-centre randomised clinical trial of muscle strengthening exercise for children with haemophilia; a commercially funded study exploring the benefits of home ultrasound to empower self-management in people with haemophilia; and an international advisory group to identify the most effective physical performance tools to monitor health outcomes in people with haemophilia. We have successfully recruited our first patient to a phase 1/2 gene therapy study offering the real possibility of cure for haemophilia to our patients.
