Watch the Project PACER Kickoff Meeting to learn more
Project PACER Opportunities for:
Patients & Families
Help build a comprehensive SDS education resource with YOUR voice at the center
Watch Eszter's 2-minute SDS Spotlight video, introducing Project PACER, then read on to see how you can be part of it.
You are the heart of Project PACER.
Now it's time to help build it.
We're creating the first comprehensive SDS education resource — with your priorities, your stories, and your voice at the center.
Why This Matters
Informed families are powerful partners in research — and that changes outcomes for everyone with SDS.
When you deeply understand SDS — the science, the research landscape, how clinical studies work — you can:
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Advocate more effectively with your healthcare team
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Help researchers design better SDS studies
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Make confident, informed decisions about clinical trial participation
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Serve on patient advisory boards
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Mentor and support other SDS families, including the newly diagnosed
Project PACER builds that capacity across the entire SDS community — together.
Our goal is clinical trials by 2030, and an informed, research-ready community is what makes that possible.
What We're Creating
Two core resources, built with community input from the start.
Living with SDS:
A Practical Guide
A comprehensive manual covering every organ system — expert clinical overviews in plain language, patient and family stories, and current research updates in each chapter.
Available as a full PDF, individual chapters, one-pagers, infographics, and in print. Open-access with DOI (target: 2027).
An Online Course Training
Built from the manual — designed to help you understand SDS deeply and participate meaningfully in research and advocacy. Delivery format shaped by your preferences.
Completing the course is compensated, thanks to PCORI funding.
Topics We're Covering
The survey asks you to choose your top 3–5 priorities. Your input directly shapes how much depth we give each topic.
● Neutropenia & immune system ● Bone marrow failure ● Cancer risk & monitoring ● HSCT — when, how & why ● Pancreatic insufficiency ● Nutrition & growth ● Liver health ● Metabolic & diabetes risk ● Bone health & puberty ● Skeletal abnormalities ● Dental & oral health ● Cognitive development ● Attention & ADHD ● Emotional health & trauma ● Quality of life ● Fertility & family planning ● Genetic counseling ● Caregiver wellbeing ● Pediatric-to-adult transition ● Navigating healthcare ● Clinical trials ● The future of SDS treatment ● Patient-centered research ● SDS communities worldwide ● And more by request!
Project PACER:
For Clinicians & Researchers
What You'll Be Able to Do
After completing the Project PACER course, you'll be equipped to make a real difference — wherever you are.
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At the doctor: Speak up more clearly and confidently for yourself or your child
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With researchers: Help scientists design better SDS studies with your informed perspective
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In the community: Help and teach other SDS families — especially the newly diagnosed
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In clinical trials: Make decisions about participation with real confidence
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On advisory boards: Provide an informed patient perspective on research planning
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With SDS Alliance: Participate in projects and help shape what we build next
How to Get Involved
Choose the level of involvement that fits your life. Every role matters.
* Several roles are compensated, thanks to PCORI funding.
Patient Co-delevopers*
Help design course content that actually prepares families for meaningful research engagement. Shape the curriculum, review materials, and guide priorities from the inside.
Story Contributors
Share your experience to illustrate a manual chapter. You'll tell us which topics your story speaks to, and we'll match you to the right chapter. Newly diagnosed families will benefit directly from your voice.
Pilot Testers*
Try the course before it launches and give feedback. Help us refine the experience so it truly works for real families.
Cours Participants*
Take the course when it launches. Earn a certificate that qualifies you to serve on advisory panels, advocate more effectively, and mentor others in the SDS community.
The survey asks which roles interest you — you're not committing to anything yet. We'll follow up with details as we finalize next steps.
Take the Survey — Your Voice Shapes What We Build
The survey covers which topics matter most, what course format fits your life, what a completion certificate means to you, and how you'd use your knowledge. 5–7 minutes. Every response directly shapes what we create.
Survey open through March 2026. All responses are confidential
What the Survey Asks
No surprises — here's exactly what you'll be answering.
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Your connection to SDS and how long you've been on this journey
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How you'd describe your current understanding of SDS
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Which topics are most important to you (pick your top 3–5 from a full list)
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Which participation roles interest you (co-developer, story contributor, pilot tester, or course participant)
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What course delivery format works best — self-paced, live, hybrid, or in-person
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What a course certificate would mean to you, and how you'd use what you learn
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How compensation affects your ability to participate in higher-effort activities
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Whether you'd like to join the SDS Alliance mailing list and global network
What Happens Next
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Now – March 15, 2026: Community survey open. Take it to shape what we build.
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Spring–Fall 2026: Chapter writing, patient story matching, and course co-development with community contributors.
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Q4 2026 / Q1 2027: Manual published open-access with DOI, and online course launches — with compensation for participants.
Questions?
Reach out to Eszter at connect@sdsalliance.org.
Help build a comprehensive SDS education resource with clinical expertise from around the world
Project PACER Opportunities for:
Clinicians & Researchers
Help build the definitive SDS education resource
Currently, there is no comprehensive, patient-centered SDS guide.
We're creating one — with clinical experts from around the world.
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PCORI-funded
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Open-access publication
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DOI-citable chapters
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Free CME/CNE training
How to contribute
Three ways to get involved
We're developing Living with Shwachman-Diamond Syndrome: A Practical Guide — a multi-chapter manual covering every organ system, each with a patient story, an expert clinical overview, and a research landscape update. Published open-access with a DOI in 2027, every chapter is a citable scholarly contribution.
Expert Chapter Contributor
Write one clinical overview (2,000–2,500 words, plain language) for a topic aligned with your expertise, from hematology and neutropenia to genetics, nutrition, transition to adult care, and 20+ more.
What you get:
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Byline credit on your chapter
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DOI-citable publication (targeting 2027)
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Acknowledgment in all derivative materials
Commitment: One chapter + one patient review round for clarity
Clinical Reviewer
Review 1–3 draft chapters for medical accuracy and currency — no writing required. Ensure the content meets clinical standards before it reaches patients and families worldwide.
What you get
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Acknowledgment in the manual
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Meaningful contribution without writing commitment
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Early access to final chapters
Commitment: Approximately 2–3 hours total
Network Partner
Share PACER resources with SDS patients in your care and with professional colleagues. Help the right information reach the right families at the right moment, to improve outcomes.
What you get
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Early access to manual chapters
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Patient education materials for your practice
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Updates on PACER progress
Commitment: As your time allows
Why it matters for your work
A stronger community benefits everyone
Patient-centered funding agencies — including PCORI and NIH — increasingly require demonstrated community engagement. PACER gives researchers a concrete, documented partnership to point to in grant applications. For clinicians, an informed patient community means better research participation, more meaningful clinical conversations, and families who arrive at appointments prepared. Every chapter you contribute directly shapes that outcome.
What to expect
Timeline
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Spring 2026 — Expert recruitment & chapter assignments
We'll match contributors to chapters based on expertise and interest survey responses.
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Spring–Fall 2026 — Writing, patient review & revisions
Chapters go through an iterative review process with both clinical and patient community input.
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Late 2026/Early 2027 — Open-access publication & course launch
Manual published with DOI; free online training for clinicians and researchers launches simultaneously.
Ready to contribute?
Complete our 10-minute interest survey for professionals and we'll be in touch as chapter assignments begin in Spring 2026.
Questions? Email us at connect@sdsalliance.org
What Project PACER has achieved so far
SDS Alliance awarded PCORI Engagement Award funding to build capacity for patient-centered CER for Shwachman-Diamond Syndrome
We are pleased to announce that the Shwachman-Diamond Syndrome Alliance (SDS Alliance) has been awarded funding through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support building capacity for patient-centered Comparative Clinical Effectiveness Research (CER) on Shwachman-Diamond Syndrome (SDS), or Project PACER for short. Eszter Hars, Ph.D. will lead the two-year engagement project (EASO-42419) through the SDS Alliance.
The biggest and most impactful patient voice meeting - the SDS PFDD meeting - is a key component of Project PACER.
Patient Posters
As a conversation starter and to give patients and families an opportunity to share their experiences in a new, impactful way, we created a series of large posters (pop-up banners) that were displayed at the Project PACER kick-off meeting, the EL-PFDD meeting, and the International Scientific Congress in Cincinnati, OH, on June 4th, 2025. The banners are portable, and we are planning to display them at additional meetings as opportunities arise. Digital copies are available to view right here.
To create these posters, patients and families were asked to fill out a simple form with all the information needed and upload photos they wanted to share.
As part of Project PACER, we invited feedback about the posters, from both the patient community and other stakeholders. The feedback was overwhelmingly positive.
