Pernicious Anaemia Priority Setting Partnership

What is the Pernicious Anaemia Priority Setting Partnership?

A James Lind Alliance Priority Setting Partnership has been established by the Pernicious Anaemia Society in partnership with the James Lind Alliance, healthcare professionals, and people who have lived experience of Pernicious Anaemia.
Our aim is to produce a top ten list of research questions that patients and healthcare professionals agree are the most important for researchers to address in the diagnosis and treatment of Pernicious Anaemia.
The top ten list will be shared with the public, research funders, national policy makers and clinical studies groups to inform their priorities and strategies for funding research. Thereby, this project will enable funders to support research for which there is great need and that is aligned with the priorities of those impacted by it.

What matters most to you?

Our objective is to give the Pernicious Anaemia community a louder voice, because no one understands Pernicious Anaemia better than those whose lives have been impacted by it. The Pernicious Anaemia PSP will help set the right direction for research and call to funders to recognize these prioritized, unanswered questions.

We need your help!

Last spring, we launched a survey where we asked you to tell us what questions relating to Pernicious Anaemia you would like answered. Over 1,300 patients, carers and healthcare professionals responded, and we received over 3,000 questions! We would like to thank everyone who took part in that initial survey.

All of these 3,000 ‘raw’ questions were categorised and refined, and similar or duplicate questions combined and assessed to ensure if they were within the scope of this PSP and checked against evidence to determine whether they have already been answered by research. We now have a list of 40 in-scope summary questions which are clear, addressable by research, and understandable to all.

We need you to help us decide which of these questions you consider to be the most important. Choose your top 10 based on your own experience.
This is your opportunity to really influence future research projects.

Read more about the next steps:

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Documentation

Updated: 15th August 2021 10.00 v7
top 10 Pernicious Anaemia priorities

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