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Infographic titled 'Your Data is Safe, Your Voice Matters' with the SDS-GPS and SDS Alliance logos. Features an illustration of a person holding a shield with a checkmark next to a locked phone screen. Four bullet points list privacy commitments: Your name stays with us — only de-identified data is shared with researchers, IRB-approved protocol required. No patient list is ever shared — third parties never receive any identifying information, no exception. You stay in control — withdraw anytime, full transparency through informed consent. Data protected like in a bank — highest encryption standards, secure US servers, GDPR compliant, meets FDA requirements.

Your Data is Safe: What Newly Diagnosed SDS Families Need to Know About SDS-GPS

Newly diagnosed with Shwachman-Diamond Syndrome? Learn how SDS-GPS protects your privacy while helping advance research and therapies for SDS.

SDS Alliance News

Eszter Hars, Ph.D., President and CEO, SDS Alliance

5 days ago

SDS-GPS survey domains including Diagnosis and Genetics, Symptoms Head to Toe, Bone Marrow Impact, Everyday Quality of Life using PROMIS surveys (new), Perspectives on Clinical Trials, and Research Interest in Registries and Biobank — Shwachman-Diamond Syndrome Alliance SDS Alliance

Living with Shwachman-Diamond Syndrome: What Lab Tests Can't Tell Us

Your (or your child's) ANC came back stable. But were they really feeling okay? Discover how SDS Alliance is adding Quality of Life (PROMIS) surveys to SDS-GPS — measuring what lab tests can't capture, and building the data we need for clinical trials by 2030.

SDS Spotlight

Eszter Hars, Ph.D., President and CEO, SDS Alliance

Apr 2

Project PACER: Building Shwachman-Diamond Syndrome Education Together

Take our 5-minute survey to shape Project PACER - a comprehensive Shwachman-Diamond Syndrome education manual and course. Co-created by patients, caregivers, and medical experts. PCORI-funded initiative.

SDS Learning Resources

Eszter Hars, Ph.D., President and CEO, SDS Alliance

Mar 5

All Blogs & News

Your Data is Safe: What Newly Diagnosed SDS Families Need to Know About SDS-GPS

Living with Shwachman-Diamond Syndrome: What Lab Tests Can't Tell Us

Project PACER: Building Shwachman-Diamond Syndrome Education Together

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