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Oxford University Hospitals NHS Foundation Trust

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Rare inherited anaemias
priority setting

Often, people with rare inherited anaemias take many years to be given a diagnosis.  Sometimes no exact diagnosis is ever made.  This can be very stressful for patients and their families.

Why do we need your help?

Because these conditions are very rare, patients can get seen by doctors who have never met anyone with this condition before.  Frequently, patients have to travel very far to see a specialist.  Because of this, not every patient across the country has equal access to the same care.

There are very few treatments available for rare inherited anaemias.  In some cases there is no treatment at all.  Sometimes all that is available is blood transfusions.  Because these conditions are very rare, there is very little research being done about them.

This is your chance to help us identify what you and other patients feel are the most important questions that researchers should focus on for the diagnosis, treatment and management of rare inherited anaemias.  We hope this helps focus the research that is going on in this area to something that will make a real difference to patients.

National survey

All our surveys have now been completed. Many thanks if you contributed responses. If you would like to be involved in the final stage of this Priority Setting Partnership there will be an all day workshop in Oxford on December 6. Please register your interest with the Rare Diseases Research Facilitator, Anju Chalin.

What will we do with your questions?

All the questions we receive will be grouped by topic and checked against published research to see if they have already been answered.

If we find pre-existing answers we will use this website to share that information.

New and unanswered questions will be ranked in order of importance by people with a rare inherited anaemia, carers, and health and social care professionals. As at October 2017, this is the stage we are currently in.

The end result will be a 'Top 10' list of research questions. These will be widely publicised. We will then work together with researchers and research funders and where appropriate, the pharmaceutical industry, to set up new research projects

The process is being facilitated by the James Lind Alliance (JLA) to ensure that it is done fairly and transparently.

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