Paid Haemophilia Research with MAPI sponsored by Novo Nordisk
We very much hope our members will help us make this a success by joining the study and contributing to understanding how haemophilia impacts your life. The study is open to anyone with haemophilia A or B who is over 13 years old. We hope to recruit 200 people to the study to ensure we have a good understanding of the range of issues our members face. The study is sponsored by Novo Nordisk, a pharmaceutical company.
The study will be divided into two age groups 13-17 years (where we will require parents to give consent to take part) and 18 years and over.
Each participant will be offered £20 as thanks for taking part.
Anonymous, aggregated results of the study will be shared in HQ, our members magazine and on the Haemophilia Society website.
Genetic screening research project
Do you think screening the general public for haemophilia & von Willebrands carrier status before pregnancy is a good idea? Should families living with haemophilia have a say in whether or not this is introduced?
Felicity Boardman is a researcher at Warwick Medical School conducting research on genetic screening. At present, very little is known about what families living with haemophilia and other genetic conditions think about genetic screening, particularly carrier screening which is carried out before a couple gets pregnant (pre-conception genetic screening).
Felicity would like to interview people who have experience of haemophilia & von Willebrands to explore their views and experiences of living with the condition and shed light on this under-researched area to submit the results to policy-makers who advise on screening policy across the UK.
If you’re 18+, are not currently pregnant and have haemophilia or von Willebrands yourself, or someone in your family does, they’d love to hear from you. Interviews will last for approximately 60-minutes and will take place either in your locality or by phone. Any travel costs you incur to attend your interview will be reimbursed.
Stop the Bleeding: Identify priorities for research into bleeding disorders
No one understands bleeding disorder better than those who experience it or care for those that do every day. The Stop the Bleeding survey has been developed to collect questions from those people who can tell us what issues they would like answered by research.
All submitted questions will then be reviewed to identify those that haven’t already been answered by existing research and create a shortlist. This shortlist will be co-created with the steering group of the Priority Setting Partnership (PSP) and those people who have expressed an interest in being involved further. The bleeding disorder PSP is managed by a steering group which includes patients representatives as well as health care professionals and other specialists.
Stop the Bleeding will then hold a final workshop to agree the Top 10 questions which we will publish on this website and seek funding for the research required to answer them.
Hive Health are looking to gather a group of people to take part in a session with the objective of supporting a pharmaceutical company gain a deeper understanding of what it is like for an individual to live with moderate or severe haemophilia A. The session itself will be in a group setting, in Central London and will last 3.5 hours.
Hive Health are looking for people that have lots of experiences, whether positive or negative, or both, that they are happy to share and believe could help improve the experience of others living with moderate or severe haemophilia A. In the session, you would be expected to speak openly and honestly about your experience of living with moderate or severe haemophilia A, in the context of scenarios and questions that are presented to you.
If you are between 18-45 years and are interested in taking part in this session on Wednesday 6th September 2017 from 18:00-21:30 please get in contact with firstname.lastname@example.org. You will be reasonably remunerated for your input and your travel expenses will be covered, within reason.