• Do you or your child have a rare genetic disease?
• Would you like to share your experiences to contribute to a new research study?
I am looking for 1-2 patients or carers who would be willing to sit on an Advisory Board for a new study. I am particularly interested in recruiting patients or carers with experience of either intellectual disability or inherited cardiovascular (heart) disease.
The title of my study is “Improving the measurement of health outcomes following genomic sequencing for people with rare diseases”. I am submitting an application for funding for this study on 3rd December 2019.
I would like patient/carer members of the Advisory Board to help me with this study by:
• Providing advice on recruiting patients to focus groups and interviews;
• Sharing their thoughts on the design of surveys that will be given to patients and the public;
• Helping me to interpret my research findings;
• Contributing to the writing of journal articles, if they wish;
• Helping me to share my results with patients and their families.
I would also like patient/carer members of the Advisory Board to review the lay person summary that I write for my application for funding, to make sure that patients and the general public can understand it.
The Advisory Board will meet once every year in Oxford. The study would last for three years, and would begin in October 2020, if I am awarded funding.
I will be able to reimburse all travel and subsistence expenses to attend Advisory Team meetings. I will also be able to provide reimbursement for your time to prepare for and attend these meetings, as per INVOLVE guidelines. Unfortunately I cannot provide reimbursement for your feedback on the funding application that I will be submitting for this project on 3rd December.
I encourage interested people to get in touch as soon as possible. My deadline for submitting this application is 3rd December, but I would require your input before this date to review my application, and in particular, help me to prepare the lay summary. My deadline for expressions of interest is therefore 21st November 2019.
Health Economics Research Centre, Nuffield Department of Population Health, University of Oxford