We need your help to shape the future of Pernicious Anaemia research
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 by a professional data analyst and the Priority Setting Partnership (PSP) Steering Group. All questions were 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. Out-of-scope and ‘answered’ questions have been made into a separate list that can still be used for future research and other projects. This ensures that none of the questions you want answers to are wasted or forgotten about.
We need you to help us identify which of these questions patients and healthcare professionals consider to be the most important. We’d like you to pick up to ten questions relating to the diagnosis, treatment and day-to-day management of Pernicious Anaemia that you want prioritised to be answered by research. Look carefully at the list of questions and choose your top ten, the questions you consider to be the most important.
What will we do with the responses?
We will look at the questions that patients and their family/carers have selected and match them against those selected by health professionals. This will produce a short-list of questions that have been identified as being the most important research topics by both patients and health professionals. These highest ranked questions will be discussed in the final priority setting workshop by patients and clinicians who together agree the final Top 10 list of priorities. This Top 10 will be announced and published on both the Pernicious Anaemia Society website and the James Lind Alliance website to promote them to researchers and funders. We will be working hard to ensure that those problems identified by you will become topics that will be thoroughly researched or addressed in one way or another. We have already brought together researchers and clinicians and made them aware of the problems with the diagnosis and treatment of Pernicious Anaemia. And these teams will be ready to pick up one or more of the research questions once they are published.
Who should take part in this survey?
We want to hear from patients with Pernicious Anaemia, or suspected Pernicious Anaemia, their family or carers and healthcare professionals with an interest in Pernicious Anaemia. The survey is open to anyone living in the UK.
This is your opportunity to help prioritise what you would like to see researched. Thank you for taking the time to complete this survey. Your support is greatly appreciated!
Have your say on Pernicious Anaemia Research Priorities!