Survey background.
Previous CureDM surveys have been published as posters, helping to advocate for the community via presentations at worldwide conferences, and supporting key publications and guidelines. These have helped CureDM to successfully raise awareness of the lived experience within the UK community, whilst providing essential support to clinicians, researchers, and the Charity. Thank you to everyone who contributed to this!
By continuing to share your experiences, you will help shape future research priorities, evidence the community needs for future potential treatments, improve clinical guidelines, and ensure that the voices of those affected by Myotonic Dystrophy are heard worldwide. This new questionnaire will be used to support posters for upcoming international conferences and meetings, and to help us understand and share experiences around specific topics such as illnesses, hospitalisations, and experience with Palliative and End of Life Care. Please keep checking our website for up-to-date details.
By continuing to share your experiences, you will help shape future research priorities, evidence the community needs for future potential treatments, improve clinical guidelines, and ensure that the voices of those affected by Myotonic Dystrophy are heard worldwide. This new questionnaire will be used to support posters for upcoming international conferences and meetings, and to help us understand and share experiences around specific topics such as illnesses, hospitalisations, and experience with Palliative and End of Life Care. Please keep checking our website for up-to-date details.
To ensure your privacy, we have designed the survey so that it is completely anonymous and NOT traceable to you. All published results will comply with Charity Commission guidelines ensuring the work we do is for the public benefit and will be viewable on our website and social media. They will never identify any individual.
Please complete the questionnaire even if you have contributed to previous surveys, as these data will not be transferred. We want to represent the current situation on more focused areas of interest.
If you wish CureDM to keep in touch with you, there will be opportunity at the end of the survey to be redirected to a separate form. This information will be gathered separate to your responses and will not be linked to your answers. Contact details will never be shared.
CureDM Charity complies with GDPR requirements and is registered with the ICO.
Please note: Questions with a * require answers to move on.