Project PACER Professional Interest Survey

  • Project PACER Professional Interest Survey

    Thank you for your interest in contributing to Project PACER! |  This 10 minute survey helps us understand your expertise and how you'd like to engage with the project. We'll contact you in Spring/Summer 2026 as we advance chapter assignments and expert recruitment. |  All questions marked with * are required.
    SDS Alliance Community survey

  • About You

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

    Please select all that apply.
  • I am*
  • What is your primary professional focus?*
  • Primary specialty/expertise*
  • Do you currently see SDS patients in your clinical practice?*
  • If you see SDS patients, how many are currently in your care?*

  • 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 core resources:

    1. 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.

    2. Online courses — separate training tracks for patients/families (understanding SDS and research participation) and for healthcare providers/researchers (patient-centered research methods and SDS clinical updates).

    Each manual chapter includes:

    • Patient/caregiver story (lived experience)
    • Expert clinical overview (plain language, 2,000-2,500 words)
    • Current research landscape (what's on the horizon)

    For healthcare providers and researchers, this means:

    • Better research outcomes — Patients who understand research processes provide higher-quality input on study design, recruitment strategies, and outcome measures
    • Increased competitiveness for patient-centered funding — Demonstrated community engagement and patient partnership strengthens grant applications to PCORI, NIH, and other funders that prioritize patient-centeredness
    • Professional development opportunity — Free training on patient-centered research methods (with optional CME/CNE credits) and SDS clinical updates
    • More effective shared decision-making — Informed patients can engage meaningfully in clinical conversations and treatment decisions
    • Research-ready community — Families prepared to participate in clinical trials and contribute to research design
    • Educational resources you can share — Materials for newly diagnosed families and their healthcare providers that reduce the burden of repeated explanations and provide accessible, practical information

    Resources will be available in multiple formats (full manual, individual chapters, one-pagers, infographics, videos, digital and print) so the right information reaches the right people in the right way.

    Publication: Open-access with DOI (target 2027)

    Learn more at www.sdsalliance.org/pacer

  • How would you like to contribute to Project PACER?*
  • If interested in writing or reviewing chapter content, which topics align with your expertise?*
  • Which manual and content formats would be most useful to you and the community? (Select all that apply)*

  • Patient-Centered Research Training
    We're planning to develop training modules on patient-centered research methods - including comparative clinical effectiveness research (CER) developed by PCORI - in partnership with our consortium partners. These would teach clinicians and researchers how to meaningfully partner with patients throughout the research process. SDS-specific content is being considered as well.

  • What training/course format would work best for you?*
  • The training/course will be FREE to all healthcare providers and researchers. What additional incentive would most increase your likelihood of completing it?*

  • Online Collaboration Platform
    We're considering building an online collaboration platform (forum, discussion board) where SDS patients, families, clinicians, and researchers can collaborate, share insights, and discuss research questions across stakeholder groups. It is not meant for medical advice, but we may be able to learn what the community is concerned about.

  • If we build this, how would you most likely use it?

  • Final thoughts

    All optional
  • Should be Empty: