You are being invited to participate in a voluntary patient and caregiver survey on POLG. Before you decide to participate, it is important that you understand why this is being done and what it will involve.
Participation will be entirely voluntary. The survey is intended for adults with POLG-related disorders and adult parents/caregivers responding on behalf of an affected individual, including children or individuals who may be unable to participate directly. No direct identifiers will be collected, and responses will be analyzed and reported in aggregate.
Findings from the survey related to health effects and daily impacts, and current approaches to treatment will be used to inform the POLG EL-PFDD meeting and help ensure that the meeting accurately represents the experiences, priorities, and unmet needs of the broader POLG community. Aggregated findings will also be incorporated into materials developed following the meeting, including a Voice of the Patient report and presentations or discussions with regulatory agencies or researchers. In addition, MitoAction plans to analyze and publish the survey findings in one or more peer-reviewed scientific journals to contribute to the broader understanding of the lived experience, disease burden, treatment priorities, and unmet needs of individuals and families affected by POLG-related disorders.
What Will I Be Asked to Do?
If you agree to participate, you will complete an online survey. The survey will ask questions about POLG, e.g., diagnosis history, symptoms, healthcare access, and daily challenges.
The survey is expected to take approximately 30 minutes to complete.
Voluntary Participation
Your participation in this research is completely voluntary. You may choose not to participate, or you may stop taking the survey at any time by simply closing your browser window. Choosing not to participate or withdrawing will not affect your relationship with MitoAction or your healthcare providers.
Risks and Benefits
• Risks: The risks of participating are minimal. Some questions may ask about medical challenges or personal experiences that could bring up uncomfortable emotions.
• Benefits: There are no direct financial or medical benefits to you for completing this survey. However, the information you provide will help researchers and advocacy groups better understand the needs of the mitochondrial disease community and may improve future awareness and care.
Confidentiality and Data Security
This survey is completely anonymous and de-identified.
• We will not collect identifying information such as your name, date of birth, email address, or IP address.
• Because mitochondrial diseases are rare, we ask that you do not include specific identifying details in any open-ended text boxes.
• All data will be stored securely on password-protected servers and will only be shared in aggregate (summarized) form in scientific publications or presentations.
Contact Information
If you have any questions or concerns about this research study, please contact Kira Man, CEO of MitoAction at kira@mitoaction.org or (888) 648-6228.
Consent Agreement
By clicking the 'Next' button below, you acknowledge that you have read and understood the information above, are at least 18 years of age (or the parent/legal guardian of a minor participant), and voluntarily agree to participate.
If you have more than one person in your household affected by POLG, please complete a separate survey for each individual.
We recognize the survey is quite long, and you may want to take a break and come back to complete your responses. You can save and return to complete the survey. To access your saved responses, you must use the same computer and browser when you return. If you try to access the survey from a different browser or device, you will not be able to resume your previous session.
Thank you for taking the time to share your experience with POLG.