New research study investigating how care should be co-ordinated for rare conditions
Are you 18 or over and a patient with a rare or undiagnosed condition?
Are you the parent or carer of a patient with a rare or undiagnosed condition?
Would you like to share your experiences of managing a rare condition in an interview?
CO-ordiNated Care Of Rare Diseases (CONCORD) is a research study which aims to investigate how care of people with rare diseases is co-ordinated in the UK and how patients and families would like their care to be co-ordinated.
Interviews will be conducted over the phone/by Skype at a time convenient for you. The interview will focus on how health care is co-ordinated for you (or the person you care for); what is important to you about how care is organised and what challenges (or costs) families face when managing a rare or undiagnosed condition. The main purpose of the interviews will be to inform the development of an online survey later in the study. Interviews will take no longer than one hour.
The CONCORD study is being led by Professor Steve Morris (UCL). The research will be conducted by Genetic Alliance UK along with a wider team of academics and experts in rare diseases.
Please note: It is possible that not everyone who wants to will be able to take part. We will ask you some basic questions about you and/or the person you care for (e.g. condition, age, and your location). This is to help us with selecting participants for the study so that, if we cannot manage to include everybody, we will be able to include a broad range of people and conditions. The information you provide will be kept securely and deleted after selection has taken place.