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Oxford University Hospitals NHS Foundation Trust

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Frequently asked questions

What is the James Lind Alliance?

The JLA is a non-profit making initiative which was established in 2004. It brings patients, carers and healthcare professionals together in Priority Setting Partnerships to identify and prioritise the unanswered questions that they agree are most important. The JLA's work is carried out by a small number of JLA Advisers. It is coordinated and overseen by the National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre (NETSCC), home to a growing number of research programmes, at the University of Southampton.

Why is this project needed?

Currently little is known about Osteogenesis Imperfecta, Fibrous Dysplasia and X-Linked Hypophosphataemia, in particular with regards to diagnosis, treatment and care. We want to identify the areas of research that matter most to patients affected by these conditions. We hope that this means that research can be focussed into areas most likely to make a difference to the lives of patients and their families.

What do Priority Setting Partnerships do?

Priority Setting Partnerships work to identify and prioritise unanswered questions about treatment and sometimes other areas such as diagnosis, for research. A Partnership will go through a process of ranking/voting and discussion to agree a final list of 10 top priorities, which will then be available to research funders.

Why Osteogenesis Imperfecta, Fibrous Dysplasia and X-Linked Hypophosphataemia. What about other rare musculoskeletal diseases?

There are lots of different rare conditions affecting the bones. However, because there are so many, a Priority Setting Partnership including all of them would have been unworkable. Also, prioritising research questions between very different diseases would have been very challenging. Osteogenesis Imperfecta, Fibrous Dysplasia and X-Linked Hypophosphataemia have been chosen because they have similarities such as fractures and bone pain. We think that there will be some similarities in the research questions identified for these three conditions.

Why adults only? Why are children not being included?

Of course Osteogenesis Imperfecta, Fibrous Dysplasia and X-Linked Hypophosphataemia affect children as well as adults. However, the research questions identified for children and adults are likely to be different. This means that combining them into one Priority Setting Partnership would be very challenging. It was also felt that adults had the greatest unmet need. However, the transition from paediatric to adult medical care was identified as a particularly challenging time. To include this, the definition of an adult for this Priority Setting Partnership starts at age 16.

Am I eligible to take part in the survey?

If you are affected by Osteogenesis Imperfecta, Fibrous Dysplasia or X-Linked Hypophosphataemia as an adult patient, or family member or carer of an adult patient then we want to hear from you. We also want to hear from any health and social care professionals who work with these patients.

Why patients, carers and health and social care professionals?

Research on the effects of treatments often overlooks the shared priorities of patients, carers and health and social care professionals. The pharmaceutical industry and academia play essential roles in developing and testing new treatments, but their priorities are not necessarily the same as those of patients, carers and health and social care professionals. Many areas of potentially important research are therefore neglected. The JLA exists to address this imbalance.

How many questions can I ask?

As many as you like - please include as many as you wish.

What questions can I include in the survey?

You can ask any questions relating to diagnosis, treatment or care and support of adults with Osteogenesis Imperfecta, Fibrous Dysplasia or X-Linked Hypophosphataemia.

Does it matter if I don’t know whether or not my question has already been researched?

No. Please ask the questions you would like answered and we will find out whether they have already been researched. If the answer is already known then we will feed this back via the website. If the answer is not already known then your question(s) will go into the list of those that will be prioritised.

Will anybody be able to trace my questions? Will they be anonymous?

No-one will able to trace your questions and you do not need to give us your name or any other details. If you do choose to give us your name and other details (see next question), these will never be linked back to your question(s). Names and contact details will be kept securely in accordance with the Data Protection Act and destroyed when the project is completed.

Can I take part in helping to prioritise the questions after the survey closes?

Yes. Please fill in your details at the end of the survey to take part.

Where can I find out more?

Go to www.jla.nihr.ac.uk. If you have further questions please contact us.

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