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