• 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?*
  • In your own words, of all the SDS-related symptoms the patient experiences, which 1-3 symptoms have the most significant impact on their life, and in what way?*
  • In your own words, are symptoms well managed or not well managed, and in what way?*
  • 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?*
  • In your own words, are there specific activities that are important to the patient, but they cannot do at all or as fully as they would like because of SDS?*
  • As it relates to SDS, what does a good day look like?*
  • As it relates to SDS, what does a bad day look like?*
  • How has SDS and its symptoms changed over time?*
  • 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)?
  • How well does the patient’s current treatment regimen treat the MOST SIGNIFICANT SYMPTOMS of SDS?*
  • How has the patient’s treatment regimen changed over time, and why?*
  • How well have these treatments worked for the patient as the SDS symptoms have changed over time?*
  • What are the most significant downsides to the current treatments, and how do they affect the patient’s daily life?*
  • Which would you rank today as most important for a possible new therapy to address? Select up to TOP 3*
  • Short of a complete cure, what specific things would you look for in an ideal treatment for SDS?*
  • What would you consider to be a meaningful improvement (for example, symptom improvements or functional improvements) in SDS symptoms or impacts that a treatment could provide? *
  • Are there types of risks or adverse events that you would NOT be willing to tolerate?*
  • Are there types of administration of treatments that would pose a bigger or smaller burden (e.g., oral pill vs injection)?*

  • 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
  • What are your most important questions about SDS that you wish research would focus on?
  • How can patient advocacy groups (SDS nonprofits) best support you? What works, and what else would be helpful?
  • How can the healthcare provider community best support you? What works, and what else would be helpful?
  • Would you like to share anything else we have not asked about?
  • Should be Empty: