Project PACER Patient/Family Survey

  • Project PACER Community Survey 2026

    Estimated time: 5–7 minutes |  All responses are confidential |  Your input shapes how we build Project PACER – a comprehensive education and research engagement program for the SDS community. This survey helps us understand how YOU want to participate and what content is most important to YOU.
    SDS Alliance Community survey

  • About You

  • What is your connection to Shwachman-Diamond Syndrome (SDS)?

    Please select all that apply.
  • I am*
  • How long ago has the patient been diagnoses with SDS? If you are taking care of several patients, chose the longest time. The patient was diagnosed...
  • How was the SDS diagnosis established?*
  • How would you describe your understanding of SDS?*
  • Have you heard about Project PACER?*

  • About Project PACER

    Project PACER is funded by PCORI (Patient-Centered Outcomes Research Institute) to help the SDS community — patients, caregivers, providers, and researchers — build shared knowledge and work together more effectively.

    We are developing two core resources:

    • Living with Shwachman-Diamond Syndrome: A Practical Guide — a comprehensive manual covering every organ system, with patient stories, clinical overviews, and research updates in each chapter.
    • An online course built from the manual, designed to help you understand SDS deeply and participate meaningfully in research and advocacy.

    When you complete the program, you'll be able to:

    • Advocate effectively with your healthcare team
    • Help researchers design better SDS studies
    • Make informed decisions about clinical trial participation
    • Serve on patient advisory boards
    • Support and mentor other SDS families

    Resources will be available in multiple formats, so the right information reaches the right people in the right way.

    Learn more at www.sdsalliance.org/pacer

  • How would you like to participate? Which participation track(s) interest you? (Select all that apply)*
  • What topics are most important to you? Please pick the TOP 3-5.*

  • Co-developers help us design and build the course — reviewing materials, shaping topics, and testing content as we create it. This is the highest-commitment track. Compensation is available for your time.

  • What time commitment would be realistic for you?*
  • What would make the co-development process work best for you? (Select all that apply)*

  • Story contributors share their lived experience for a specific chapter in the manual. We'll support you every step of the way if helpful — through an interview, a template, or help editing something you've written.

  • What support would be most helpful as you share your story?

  • Manual and course preferences: Your preferences will help us design the course and plan how we deliver materials — both during co-development and when the final program is ready.

  • Which manual formats would be most useful to you? (Select all that apply)*
  • For the course, what delivery format would work best for you? (Select all that apply)*
  • What session length do you prefer?*
  • How would you access to course?*
  • What would make the course certificate/recognition most valuable to you? (Select all that apply)*
  • After completing the Project PACER course, how do you think you might use your knowledge? (Select all that apply)*
  • How would receiving compensation impact your interest or ability to participate in higher-effort activities? We offer compensation for course co-development, pilot testing, and completing the course. Story contributions are a volunteer activity.*

  • Final thoughts

    Optional
  • Should be Empty: