New research study investigating how care should be coordinated 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 take part in a focus group to discuss research findings?

COordiNated Care Of Rare Diseases (CONCORD) is a research study which aims to investigate how care of people with rare diseases is coordinated in the UK and how patients and families would like them to be coordinated.

The focus groups will be run by a researcher and made up of a small group of patients and parents/carers. One focus group will be conducted online (11th December 2018) and the other will be conducted face to face in Birmingham (6th February 2019). The purpose of the focus groups will be to develop our understanding of information that is already available about co-ordinated care for rare diseases. The findings of the focus groups will inform the development of a survey which will be sent to patients, carers and health care professionals later in the study. The focus groups will take two hours. If you take part in a face to face focus group, travel expenses and child care costs will be reimbursed.

Who should I contact if I want to take part?

If you would like to take part in one of the focus groups, or you would like to ask further questions, please contact Holly Walton: holly.walton@ucl.ac.uk / 02031083068

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, 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.

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