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Survey for the Development of an Internationally agreed Minimal Dataset for JDM

The JDM Minimal Dataset Study Group are looking for UK respondents to their online survey.

From the JDM Minimal Dataset Study Group:-

We are currently running a research project about Juvenile Dermatomyositis (JDM).

If you are

  • A child or young person with Juvenile Dermatomyositis (JDM)
  • An adult who developed Dermatomyositis as a child
  • A parent of a child with Juvenile Dermatomyositis

We would like your opinion on what you think is important for doctors, nurses and therapists to look for when you / your child comes to clinic.

We would like you to complete a questionnaire that asks what you think is important for doctors to ask you or your child when you come to clinic.
Please look at the information leaflets about this study, available on the link below – after you choose either the 'patient' or the 'parent' questionnaire options.

If you would like to be involved we will ask you to sign a consent form and then complete a questionnaire. This is not a test and there is no right or wrong answer – we are simply asking you to think about when you or your child come to clinic, what you think is important for doctors / nurses / therapists to ask about JDM.

We expect that some of the things listed on the questionnaire you will not think are very important and others you may think are very important. Your opinion will help us to decide what we should include in a minimal dataset (a collection of information) that doctors and nurses / therapists should collect every time a young person with JDM comes to clinic.

You can access the questionnaire, information leaflets and consent forms by following this link: https://ctrc.liv.ac.uk/Delphi/JDMConsumer

If you think you may like to be involved in this study and you would like more information, please contact Dr Liza McCann, Juvenile.Dermatomyositis.Study@liverpool.ac.uk

Dr McCann works at Alder Hey Children's NHS Foundation Trust, Eaton Road, Liverpool, L12 2AP.

You are under no obligation to take part if you do not want to, but we would appreciate your help.

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