Project PACER Survey 2026

First Name / Family NameLast Name / Given Name

an adult diagnosed with SDSa minor under the age 18 years, diagnosed with SDSa parent/primary caregiver to someone diagnosed with SDSsuspecting or pursuing an SDS diagnosis for myself or a loved onea friend/family member of someone with SDSa researcher interested in SDSa healthcare provider interested in SDSa diagnostic provider for SDSa pharma/biotech representative interested in SDSan advisor/mentor to the SDS Alliancesponsor/grant maker to the SDS Alliancea service provider/vendor to the SDS Alliancea nonprofit representative from a related/rare disease communityother

Genetic testing confirmed the SDS diagnosis (SBDS or EFL1 gene)Genetic testing confirmed an SDS-like diagnosis (SRP54 or DNAJC21)Clinical observation - no genetic testing performedClinical observation - genetic testing was inconclusive or negativeSuspected but not confirmedNot sureOther

Very knowledgeable (could explain to others)Moderately knowledgeable (understand basics and some complexity)Somewhat knowledgeable (still learning)Just beginning to learnPrefer not to answer

Yes, please add me to your email list and Global Network.

Research Network Member

Clinician Network Member

Nonprofit Rare Disease Community

Mentors, Partners, Peers

Sponsor/Grant maker/Business Partner

Service Providers/Vendors

Diagnostic Providers

Pharma/Biotech Representatives

Yes, I'm familiar with itI've heard of it but don't know detailsNo, this is new to me

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

CO-DEVELOPER – Help design and build the course and manual (higher time commitment, compensation available, early access to materials)STORY CONTRIBUTOR – Share my experience for specific topics in the manual (we'll help you write or record it)PILOT TESTER – Test early versions and provide feedbackPARTICIPANT – Take the course when it's readyNot sure yet – Send me more information firstNot this time — But keep me informed

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.

3–5 hours total (spread over several weeks)6–10 hours total (spread over 2–3 months)10–20 hours total (comprehensive involvement over 3–4 months)Flexible — I'll make it workDepends on the value and how it fits my schedule

Virtual workshops with live discussionAsynchronous work (review materials on my own schedule and provide written feedback)Short Zoom calls (30–45 minutes)Longer working sessions (1–2 hours)Access to materials in advanceClear tasks and deadlinesFlexibility to miss some sessions if neededOther

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.

Template or questions to guide meInterview format (you ask, I answer, you write it)Help editing my written draftSeeing examples of other stories firstOther

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.

Self-paced online modules (complete on your own schedule)Live virtual sessions with Q&AHybrid (some self-paced, some live sessions)In-person workshop at a conference or eventOther

Computer or laptopMobile phone or tabletIn-personOther

Formal recognition of my knowledge and expertiseQualification to serve on patient advisory panels and other research planning activitiesEnhanced ability to advocate effectively when I work with my healthcare teamPeer recognition within the SDS communityEvidence of my commitment to advancing SDS researchAbility to mentor or support other SDS families, incl. newly diagnosed familiesRecognition is nice, but not a major factorOther

At the doctor: Speak up more clearly for myself or my childWith researchers: Help scientists design better SDS studiesIn the community: Help and teach other SDS familiesWith SDS Alliance: Participate in projects and help deliver themIn clinical trials: Make decisions about participation with confidenceOn advisory boards: Provide informed patient perspectiveAs a mentor: Support newly diagnosed familiesOther

Essential: I likely cannot commit the necessary time without compensation (e.g., to cover childcare or missed work).High Impact: I am much more likely to prioritize these activities if compensation is provided.Moderate Impact: It makes the opportunity more attractive, but it isn't the deciding factor.Low/No Impact: I would participate regardless; my primary motivation is helping the community/research.Reinvest: I prefer not to be compensated and would rather the funds be used for other SDS Alliance initiatives.Other

Project PACER Community Survey 2026

About You

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

About Project PACER

Final thoughts