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Psychological Aspects and Implications of Predictive Genetic Testing for MND

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    Psychological Aspects and Implications of Predictive Genetic Testing for MND

    Online survey to understand the psychological impacts of predictive genetic testing and familial MND among at-risk relatives.

    This study aims to investigate what factors, such as individual’s beliefs and psychological qualities, may differ between those who choose to get tested compared to those who do not. In addition, this study also aims to investigate the psychological impact of receiving predictive genetic testing for MND. Using this information, the team hope to help better inform individuals at-risk of familial MND as well as relevant professionals about whether receiving predictive genetic testing is the right choice for that individual.

    What does taking part involve?

    Potential participants will enter a survey hosted on REDCap to view a consent form and then answer four eligibility questions.

    Eligible participants who consent to participate in the survey will then answer a series of questionnaires on REDCap including questions on their general wellbeing, their family functioning and the psychological impact of their experiences related to familial MND. The study should take 15 to 35 minutes to complete.

    Upon completion of this survey, participants will be first debriefed then redirected to a separate REDCap survey form to choose how they will be reimbursed (participants can choose to receive either $15 AUD directly via PayPal or to donate the $15 to a nominated charity of their choice).

    Who can take part?

    The study is open to international participants but hosted in Australia.
    • Individuals at risk for familial (inherited) MND/ALS
    • Individuals who have received their predictive testing result for familial (inherited) MND/ALS
    • Individuals who have NOT received predictive genetic testing for familial (inherited) MND/ALS
    Exclusion Criteria:
    • Individuals under 18 years of age.
    • Individuals who already display ALS/MND symptoms
    How can I take part?

    To take part, please click here: Take part in this study.

    For any queries and more information, please email the study researcher, Ms Marika Blonner, at [email protected] or visit the MND Association website: https://www.mndassociation.org/resea...sting-for-mnd/

    Funding
    This study is funded by the MND Research Centre, Australia.

    Expiry date: December 2023

    Our working hours are Monday to Friday 8:30am until 5pm
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