This study is now closed you can read the final report here.
James Lind Alliance (JLA) Priority Setting Partnership
This study is now closed you can read the final report here.
The next step will be to issue a shortlist of questions in another survey asking which you think are the most important. More information about this will be available shortly.
The final stage of the project will be a workshop at the Friends House, 173-177 Euston Rd, Kings Cross, London NW1 2BJ on Monday 18 June 2018. The workshop will take place from 10am until 4pm and will include approximately 40 people, made up of patients and carers, as well as health professionals. It will be run by independent facilitators who will make sure that everyone has an equal chance to put their thoughts across.
If you are interested in taking part in this workshop please email for more information.
The Study
Created to identify unanswered questions about Osteogenesis Imperfecta and other rare conditions which affect the bones in adults, the JLA is bringing together patients, carers and social care professionals in Priority Setting Partnerships (PSPs) to agree what research matters most to patients and healthcare professionals.
What questions do you think need answering in the area of Osteogenesis Imperfecta?
