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1. Information Sheet

Purpose of Survey:
    1. Evaluate the prevalence and severity of people living with Duchenne and Becker Muscular Dystrophy (DMD/BMD) with brain-related comorbidities.
    2. Collect information on the treatment options available, and the extent to which people living with DMD/BMD have had support or require treatment for these comorbidities.
    3. Identify red flags related to neuropsychiatric comorbidities, thus highlighting areas requiring attention and facilitating targeted interventions for optimal patient outcomes.
What kind of information/data do I provide?
By participating in the Survey, I will be asked to provide:
    1. Participant ID from my participation in the previous BIND clinical study (if this applies to the participant).
    2. Feedback in anonymised format: By participating in the survey will be asked to provide information on the presence of brain-comorbidities and their impact on working memory, executive function, reading, and arithmetic skills. The feedback I provide will remain anonymous at all times and for all purposes including publications and further sharing as no personal identifiable data will be used.
Why is my information/data processed?

    1. Participant ID: To better evaluate the research activity findings and for communication reasons.
    2. Feedback in anonymised format: collects, stores and process this feedback in anonymised format for the sole purpose to better evaluate the research activity findings.
Voluntary Participation: I understand that my participation is voluntary.

Consent Withdrawal:
    1. Participant ID processing: I may revoke my consent regarding the processing of my personal data at any time for any reason.
    2. Feedback in anonymised format: I understand that I may be restricted from withdrawing the present consent or claiming the deletion of the feedback in anonymized format I provide, from the generated content as this may not be technically feasible.
Third parties:

    1. Participant ID: It will be shared solely internally between the research team of KEMP, partner of the BIND consortium, that will perform the data analysis. The SurveyMonkey tool will also retain survey data. Survey data can be deleted from the SurveyMonkey account upon request within 60 days from the received request.
    2. Feedback in anonymised format: It will be shared between the BIND partners and will become publicly available-in a summary form- through the project’s website.

Storage:

    1. Participant ID: In an online secure environment (ISO/IEC 27001:2013) provided by a member of the BIND consortium. The database connected to the cloud storage and the data are hosted in a data centre physically located within the EU. The specific data centre is also certified with the above-mentioned certification and relevant compliance statements. The data will be retained for 10 years.
    2. Feedback in anonymised format: Same as above.

Question Title

* 1. I have read this consent form and understood the aims of the research activity.

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* 2. I agree and provide specific and informed consent to participate in the survey conducted by the BIND consortium.

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* 3. I consent to the processing of my Study ID as described herein.

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* 4. I agree and provide specific and informed consent to share my anonymous data and/or content through the completion of an online questionnaire.

© 2023 BIND Project. All rights reserved. Unauthorized use, reproduction, or distribution is prohibited. Contact info@bindproject.eu for permissions.
 
 17% of survey complete.

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