Last year many of you may recall that a group of rare disease stakeholders came together to form a Priority Setting Partnership (PSP) to find out what matters to patients, carers and clinicians in the field of Bleeding Disorders. Some people experience problems with bleeding throughout their lives as the result of an inherited disorder such as haemophilia or von Willebrand disease. Others may have long-term problems due to an acquired problem such as immune thrombocytopenia and finally some people may have experienced problems only after childbirth or surgery. To this end the PSP launched a survey 12 months ago asking for people to consider which questions they think are the most important for researchers to be asking.
We are pleased to announce that following the initial survey, all the questions submitted have been collated and simplified and are now contained in a final survey which is live at www.stopthebleeding.org.ukThe results of this new survey will be considered at a workshop beginning of July to determine the top 10 questions for research.
If members have already completed the first survey, they will have already been invited to complete the second. If they did not undertake the first survey, that will not prevent anybody completing the second survey and voting for their choice of question. Recommend you have a look at it yourself. You will need a pencil and paper!
This survey is facilitated by The James Lind Alliance, PSPs are groups which bring together stakeholders to set priorities for research in a particular disease field. They aim to facilitate the inclusion of patient voice at the centre of priority setting and have collaboration at their core.