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Frequently asked questions

What is the James Lind Alliance?

The National Institute for Health Research (NIHR) funds the infrastructure of the James Lind Alliance (JLA) to oversee the processes for Priority Setting Partnerships (PSPs). PSPs aim to help patients, carers and clinicians work together to agree which are the most important treatment uncertainties affecting their particular interest, in order to influence the prioritisation of future research in that area – in this case relating to rare inherited anaemias.

What is the Rare Inherited Anaemias Priority Setting Partnership (PSP)?

It is a partnership that brings together patients, carers and health and social care professionals to agree what research matters most in the field of rare inherited anaemias. By Rare Inherited Anaemias, we mean:

  • Diamond-Blackfan Anaemia
  • Congenital Dyserythropoietic Anaemia
  • Congenital sideroblastic Anaemia
  • Red cell Membrane disorders
  • Red Cell Enzyme disorders
  • transfusion-dependent unexplained inherited anaemias

How did the Partnership come about?

This partnership has come about from informal discussions between doctors, scientists and patients with rare inherited anaemias.  Together we felt that there is not enough research into rare inherited anaemias, and that patients’ voices are not being heard about what THEY would like the research to be about.  We teamed up with the NIHR Oxford Biomedical Research Centre Patient Involvement Working Group who were interested in running a PSP on a rare disease.

Who is involved in the Partnership?

Organisations and individuals have been invited to join the PSP representing people who have, or workas health or social care professionals or volunteersto support people with:

  • Diamond-Blackfan Anaemia
  • Congenital Dyserythropoietic Anaemia
  • Congenital sideroblastic Anaemia
  • Red cell Membrane disorders
  • Red Cell Enzyme disorders
  • transfusion-dependent unexplained inherited anaemias

Can other organisations still get involved?

Yes. We need to make sure that people know about the opportunity to take part in the national surveys and learn about the results of the project, and that funders are made aware of the top 10 priorities. You can help by promoting the surveys and, at the end of the project, disseminating the report.

How can organisations and the public find out more?

For more information or to get involved, email the James Lind Alliance Project Manager at the NIHR Oxford Biomedical Research Centre, or leave a voicemail on 01865 223298.

What do you hope to achieve?

We hope to identify the unanswered questions about rare inherited anaemias from patient, carer and clinical perspectives and then prioritise those that all three groups agree are the most important.

What are your objectives?

Our objectives are to:

  • work with patients and clinicians to identify uncertainties in the diagnosis, treatment, management and care delivery of people of all ages with rare inherited anaemias, and the impact on their families;
  • to agree by consensus a prioritised list of those uncertainties, for research;
  • to publicise the results of the PSP and process;
  • to take the results to funding  bodies to be considered for funding.

How long will the project take?

We hope to have finished by mid 2017.

How many survey responses are you hoping for?

As many as possible.  Previous PSP surveys in other fields have achieved anything from a few hundred responses to several thousand.

How is research currently funded and prioritised?

Researchers and research funders predominantly determine which areas are researched. Often this is done with reference to current literature – to identify where the gaps in knowledge are. This is sometimes done with input from patients, carers, and health and social care professionals – although never in such a thorough and systematic way as will be achieved through this partnership. The PSP process will uniquely combine the input of patients, carers and clinicians with a search of the literature.

What are the “top 10” research priorities?

These will emerge from an interim prioritisation survey and subsequently a final workshop.

What will happen to the “top 10” questions?

The “top 10” questions will be publicised and discussed at events where research funders will attend. The PSP will work with its stakeholders and partners to raise awareness of the priorities and try to get them funded as research projects. The questions will be considered by the National Institute of Health Research (NIHR) and other funding organisations when commissioning research.