We are recruiting people to take part in the patient and public involvement (PPI group) for this project. The PPI group will advise the research team to ensure the project is run with the views and needs of patients and families in mind. No research experience is required and participants will be paid a daily rate plus all travel and subsistence costs to participate.
About the project
A large number of rare diseases are so rare or poorly understood that to date they have not been diagnosable. Solve-RD is a European project that aims to use a wide range of tests to diagnose these rare diseases for affected patients and families.
Results from these kinds of tests can be challenging to interpret – as can a lack of a result – and the way this is discussed between healthcare professionals and patients along with their families is important. As part of the Solve-RD project, this study will bring together patients, families and healthcare staff to improve the ways in which results from tests are shared. The study will involve interviews with patients, families and health care professionals; the creation of a short film on patient experience; and finally, meetings during which patients, families and healthcare professionals will review the interview findings and film. At these meetings the participants will begin the process of co-designing improved ways of communicating the results of complex tests.
The Patient and Public Involvement (PPI) Group
We’re looking for 10-12 patient representatives to join the PPI group. We would like to include:
- Patients with developmental delays and possible syndromes, and their families
- Patients and families who have had complex genetic tests (i.e. panel tests, exome or whole genome sequencing) – regardless of whether the test gave a diagnosis, or ruled something out, or gave an unclear result
- Patients and families linked to a project called the ITHACA European Reference Network (ERN)
If you come under any of these categories, we would like to hear from you, including patients and families who have never taken part in a research study before. We will involve a range of participants but unfortunately will not be able to include more than 12 people.
What will be required from the PPI Group
The aim of the PPI Group is to ensure a strong patient voice within the study. Members of the PPI Group will be invited to advise the project team on:
- Research materials and how easy they are to understand, whether they are sensitively written etc (materials will include a participant information sheet, recruitment posters, etc.)
- How best to recruit study participants
- Running the research events with patients and families
- Other relevant issues that may arise from the study
The PPI group will meet in Birmingham. The meetings will be chaired by Tina Nesbitt, who is a SWAN UK Parent Rep and the parent of a child with an undiagnosed genetic condition who is taking part in a genome sequencing project.
The first meeting will take place on 2 October in Birmingham. Ideally we would like participants to be able to attend in person but arrangements will also be made for virtual participation.
There will be a further three or four meetings before the end of 2018, and another three or four meetings before the end of the project (September 2019). Anyone who is unable to travel to any of the meetings will be able to take part virtually.
In addition to travel and subsistence costs, participants will be reimbursed for their time (£150 per day).
HOW TO TAKE PART
Please send the following to [email protected]
- Your name
- The region you live in
- Briefly explain why you are interested and whether you have done anything similar in past
- Whether you are associated with any patient organisation
The deadline for applications is the 6 September.