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Thread: Experiences with inherited MND - Healthtalk

  1. #1
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    Experiences with inherited MND - Healthtalk

    Researchers at the University of Aberdeen are conducting an interview study about the experiences of families who have been affected by inherited forms of MND, to develop a new web resource on the Healthtalk website. Healthtalk is used to help support others going through similar experiences, and help train doctors, nurses, GPs and other health professionals to understand inherited MND.

    What is involved?
    Taking part in the study will involve being interviewed about your experiences of inherited MND, your thoughts and feelings, how you found information, and how you made decisions, and any issues important to you that would like to share.

    Who is invited to take part?
    People with inherited MND running in their family, including:
    Those who currently have symptoms of an inherited form of MND
    Those who may be at risk of developing MND in the future
    Partners and other relatives, including family caregivers.

    How do I take part?
    If you are interested in taking part in this study and would like to see the Participant Information Sheet, or if you have any questions, please contact Jade Howard, PhD researcher, on either j.howard.18@abdn.ac.uk or call on 01224 438409.

    Where do I find more information?
    Find out more about the study on our website.

  2. #2
    Forum Administrator Admin_MND's Avatar
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    The researchers of this study are still looking for a handful of participants, and there are some gaps in the sample that they are hoping to fill. They are interested in hearing from anyone with inherited MND in the family, but are particularly looking to speak to:

    • Younger people (i.e. under 40), including those with a grandparent diagnosed with inherited MND
    • People with a family history of MND but who have received a negative pre-symptomatic genetic testing result
    • People who have a gene linked to inherited MND but who have no other family members who they know have been affected
    • People from BAME communities

    Find out more about the study on our website. If you are interested in taking part in this study or have any questions, please contact Jade Howard, PhD researcher: j.howard.18@abdn.ac.uk.

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