Panelist Recruitment Survey

The United Mitochondrial Disease Foundation and MitoAction are very excited about another collaborative opportunity to share the patient voice with the Food and Drug Administration (FDA) - the Voice of the Pyruvate Dehydrogenase Complex Deficiency (PDCD) Patient Community. We have been approved for a Virtual FDA Listening Session on Friday, September 8, 2023 from 1:00pm to 2:30pm ET.  FDA Listening Sessions are closed and by invitation only. We are currently seeking patients and caregivers to serve as panelists for this important awareness event.  Please take a few minutes to answer the questions below.  NOTE:  Completing this survey does not automatically place you on the panel.  Your information will be reviewed an independent FDA consultant to determine the best fit for the panel.  This survey will close on May 19th.  If selected, you will be notified no later than June 16, 2023.
 
While we are limited on the number of panelists allowed, we will definitely reach out to the entire PDCD community to complete a survey to capture your voice. You will be part of this important event!

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* 1. Contact Information

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* 2. What Best Describes You?

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* 3. Day in the Life of PDCD Patients and Caregivers
Please describe your, or your child's, top 3 most troublesome symptoms and other consequences and/or burdens of PDCD on your daily life.  Explain why you chose these, including how they impact your ability to do activities in daily life.

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* 4. Idealized treatments and Meaningful Quality of Life Improvements
Please describe your experience with treatments and other approaches to managing your PDCD. This can include drugs to treat symptoms and other non-medical approaches, such as diet, exercise, and lifestyle modifications.  What would meaningful quality of life improvements look like for you or your loved one?

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* 5. Tolerance for risk
If you knew a treatment would not help you 100% but would give you some quality of life improvement, would such a treatment still be of interest to you?

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* 6. Have you participated in a clinical trial?

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* 7. If yes, what trial and why did you decide to participate?

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* 8. If no, were you aware of opportunities to participate and if so, why did you choose to not participate?

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* 9. Have you and/or the child/adolescent patient been genetically diagnosed with PDCD?

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* 10. Do you have public speaking experience?

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* 11. Do you have advocacy experience (speaking experience, attending Day on the Hill, etc)?

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* 12. Do you keep a blog or share your story on social media?

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* 13. If selected, are you available for the following event dates?

  Yes No Maybe
Date TBD - Tech Run Through on Zoom - typically ONE Week Before
Friday, September 8, 2023 - 12:45pm to 2:30pm Eastern Time (Zoom Listening Session Date)

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* 14. Please use this section to share more about your journey with PDCD and/or include any questions you may have about the FDA Listening Session for PDCD.

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