Pre-Meeting Community Survey

  • Pre-Meeting Community Survey

    This survey was developed by the SDS Alliance to help the SDS community get familiar with the topics that will be discussed during the SDS PFDD meeting, to help refine the questions to meet the needs of the community, and to contribute insights for the meeting and the resulting Voice of the Patient Report. This survey is completely voluntary, anonymous, and has been approved by our IRB. Only patients and/or caregivers should fill out this survey. Only one per patient, please. For more information about the SDS PFDD meeting, visit www.sdsalliance.org/pfdd

  • Demographic questions

    These questions are similar to the first set of polling questions at the PFDD meeting, and will help us get an overview of the make up of the community.
  • Are you a patient (person with SDS) or a caregiver (e.g., a parent to a patient)?*
  • Where do you currently reside?*
  • What sex was assigned to the patient at birth?*
  • How old is the patient now?*
  • At what age did SDS symptoms first appear?*
  • At what age was the patient officially diagnosed with SDS?*
  • How was the SDS diagnosis established?*

  • This section will ask you about the SYMPTOMS and DAILY IMPACT of SDS.

    These questions are similar to the topics discussed during the first half of the SDS PFDD meeting. Not all questions will be covered during the meeting and some may be modified.
  • For the patient, which organ systems are impacted by SDS? Select all that apply.*
  • Which of the following SDS-related health concerns has the patient ever experienced? Select ALL that apply.
  • Select the TOP 3 most troublesome SDS-related health concerns that the patient has experienced. Select up to 3
  • Would you describe the patient’s SDS symptoms as currently well managed?*
  • What specific activities of daily life does the patient struggle with?*
  • What specific activities of daily life would be MOST IMPORTANT TO THE PATIENT to see improvements in?*
  • What worries you most about SDS’s impact in the future? Select the top three.*

  • This section will ask about your perspective on CURRENT and FUTURE APPROACHES TO TREATMENTS for SDS.

    These questions are similar to the topics discussed during the second half of the SDS PFDD meeting. Not all questions will be covered during the meeting and some may be modified.
  • What medications or medical treatments has the patient used to treat symptoms associated with SDS? Select ALL that apply.*
  • Besides medications and treatments, what are you currently doing to help manage the symptoms of SDS? Select ALL that apply*
  • What is the patient currently doing to help monitor/detect risks or complications caused by SDS (i.e. issues that could happen in the future due to SDS)?
  • Which would you rank today as most important for a possible new therapy to address? Select up to TOP 3*

  • Bonus Questions

    These are not required, and are not part of the PFDD meeting or the Voice of the patient report, but will help us understand the community's needs and interests better, to serve you better.
  • Is the patient currently participating in a patient registry or cohort study? Select all that apply
  • Should be Empty: