News & Events

What should be researched for your rare disease?

Last Reviewed 01/11/2017

By Mariana Campos

‘The idea of bringing together clinicians, patients and carers to discuss research priorities seems obvious – why shouldn’t all those affected have a chance to jointly discuss frustrations about the things we don’t know, and aspirations for the future?’                                                           

Patient involved in the Sight Loss and Vision PSP

We are inviting members of Genetic Alliance UK to join our Rare Disease Priority Setting Partnership (PSP) to find out what research is important to your patients and service users, carers and relatives, and clinicians and other healthcare professionals. We will be using a tried and tested method – you can read more about it here. This is a robust method that enables patients, carers and clinicians to come together on an equal footing to develop a ‘top 10’ (plus a longer) list of unanswered research questions in order of priority.

Why should you be involved?

  • This process shows a genuine commitment to patient involvement in research priorities. These PSPs are taken seriously by organisations that fund and support research. The James Lind Alliance (JLA), which facilitates PSPs, is long-standing and well known.
  • The results of a top 10 research priority list can be used to inform your research strategy and help you better understand the needs of the patients, families and stakeholders you serve.
  • The process will help you to secure research funding. The JLA gives the process a stamp of quality and research funders actively look for JLA PSPs when deciding which research to fund.
  • JLA PSPs allow you to raise awareness of your condition and research priorities directly with researchers.
  • PSPs are an empowering and engaging activity for your patients, as they will be fundamental to the process of creating them.
  • The JLA PSP process enables you to build relationships with a range of key stakeholders, clinical, research, patients.
  • You will be part of a steering group with healthcare professionals, patient organisations and patients interested in similar areas. It is a powerful tool to start collaboration and share learning.
  • As a member of Genetic Alliance UK, taking part in the process costs you nothing. In fact, you will receive payment and expenses for your participation.


Can I take part? What do I need to do?

If you are a member of Genetic Alliance UK, you can make your expression of interest here. Our members’ responses will determine the topic of the PSP. For the exercise to be successful, we will need a number of committed patient groups representing related conditions, and will make a selection from the expressions of interest we receive.

Patient organisations that ultimately take part will be asked to join our steering group. The steering group will meet monthly from spring 2018 to winter 2019, either via face to face meetings or teleconference. You will receive payment and expenses for your participation. We will also ask you to promote the PSP to your patients and other stakeholders.

Register your interest

If you want more information, please contact Mariana via email or call 020 7831 0883.




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