Haemnet Research Studies

At a time of rapid treatment developments and advances in care, understanding and measuring the lived experience of people affected by bleeding disorders is more important than ever.

Haemnet works closely with healthcare professionals, patient communities, industry and other key stakeholders to deliver bespoke qualitative research into the lived experience of people affected by bleeding disorders.

Thanks for visiting the Haemnet research page. Here you can navigate a list of our past, ongoing and upcoming research projects.

Haemnet undertake a variety of research projects, so whether you are a person with a bleeding disorder, parent/carer, or healthcare professional (HCP), there are opportunities for you to share your experiences and insight, to contribute towards vital research in the bleeding disorders.

If you want to be notified about new Haemnet research projects you can sign up to our mailing list

Sign up to the mailing list

Our studies

An exploration of the impact of gene therapy on the lives of people with haemophilia and their families status:
ACTIVE

Take part
An exploration of the lived experience of women who bleed that aims to identify unmet medical need status:
ACTIVE
(registration closed)
An assessment of the pain experienced by people with haemophilia and how it is perceived by healthcare professionals status:
PLANNED
An exploration of the impact of emicizumab on the lives of people with haemophilia and inhibitors and their families status:
PLANNED
An examination the expectations and the realities of using extended half-life products in a cohort of patients with haemophilia in the UK status:
COMPLETED
A feasibility study of how to promote engagement and adherence with exercise programmes in young men with haemophilia status:
COMPLETED
A multinational observational study into the impact of bleeding on caregivers of children and young people with haemophilia status:
COMPLETED
A UK multi-centre study of self-reported function, health-related quality of life and joint health in boys with severe haemophilia status:
COMPLETED
An assessment of the impact of living with a long-standing inhibitor from the perspective of adolescents/young adults with haemophilia status:
COMPLETED
Disclaimer: Participation in Haemnet research studies is entirely voluntary. You are free to take part or not as you choose, and even if you agree to take part in a study and then change your mind, you can withdraw at any time without providing a reason. Withdrawing from the study will not affect your haemophilia care in any way. If you decide to take part in any of our studies, you will be asked to sign a consent form. Any information collected about you in the course of the study will be kept strictly confidential: no personal identifiable information, such as your name and address, will be included in our records. Any study reports and publications will be written in a way that no one can work out that you took part in the study. We cannot guarantee that your participation in any of our studies will help you directly. However, it may help you and others in the future. For full details on our Privacy Policy and Terms and Conditions.