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

Eszter Hars, Ph.D., President and CEO, SDS Alliance
5 days ago
4 min read

Updated: 4 days ago

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.

A Shwachman-Diamond Syndrome (SDS) diagnosis brings an overwhelming amount of new information — genetics reports, specialist referrals, treatment decisions, and a steep learning curve about a disease most people have never heard of. In the middle of all of that, joining a patient registry may not feel like a priority. And for many families and adult patients, questions about data privacy create an additional barrier.

We understand. At SDS Alliance, we built SDS-GPS — the Shwachman-Diamond Syndrome Global Patient Survey and Collaboration Program — with those concerns in mind from the very beginning.

This post is for families and adult patients who are newly diagnosed, recently connected with the SDS community, or simply wondering: is it safe to share my child's — or my own — information? The short answer is yes. Here is the longer one.

What is SDS-GPS?

SDS-GPS is a free, secure online platform where patients and families from anywhere in the world can share their experience living with SDS. It is designed to be accessible — available in English, Spanish, French, Italian, and German — and flexible, so you can complete surveys at your own pace and return whenever you have time.

The information shared through SDS-GPS helps researchers understand how SDS affects real people across the full spectrum of the disease. It informs clinical trial design, shapes educational resources, and builds the evidence base that drug developers and regulators need to move therapies forward. For a rare disease with a small global patient population, every participant matters enormously. Every patient counts.

What happens to your data?

This is the question we hear most often, and it deserves a clear answer.

Your name never leaves SDS Alliance. Only de-identified data — information stripped of anything that could identify you, your child, or your loved one — is ever shared with researchers. Your name, date of birth, and any other identifying details are kept strictly separate and are never included in what goes to the research community.
No patient list is ever shared with third parties. This is an absolute policy, with no exceptions. Researchers who want to reach SDS-GPS participants for clinical trials or studies submit a request to our Data Access Committee. If approved, SDS Alliance (not the study sponsor) distributes IRB-approved recruitment materials on their behalf. Your contact information is never handed over.
Researcher access is gated through formal review. Any researcher who wants to use SDS-GPS data must apply to our Data Access Committee — a group that includes scientific, medical, legal, and patient representatives. The Committee reviews whether the proposed research aligns with the purpose of the program and the interests of the community before any data is released.
You stay in control at every stage. Participation in SDS-GPS is entirely voluntary. You can withdraw at any time, for any reason, by contacting our team. You also have the right to request deletion of your personal information. We will remove your identifiable data to the fullest extent possible.
Your data is protected to the highest technical standard. SDS-GPS data is stored on secure, password-protected servers in the United States, using the highest available encryption standards. For families outside the US, the same privacy protections apply — and the program is fully compliant with the General Data Protection Regulation (GDPR), as it applies to European participants.

SDS-GPS is an IRB-approved research program, which means an independent Institutional Review Board — whose role is to protect the rights and welfare of research participants — has reviewed and oversees the ethical conduct of the program.

Why does participation matter, especially now?

SDS is rare. That rarity is part of what makes it so difficult to study, and part of what makes every participant's contribution so significant. Clinical trials require a critical mass of informed, engaged patients. Researchers need real-world data to understand the full picture of how SDS progresses across different ages, mutations, and circumstances.

SDS Alliance's next big goal is clinical trials by 2030. Getting there depends on building a strong, research-ready community — and that starts with families like yours.

If you are newly diagnosed, joining SDS-GPS is one of the most concrete things you can do right now to contribute to progress, even before any treatments are available. Your data, combined with data from other SDS families around the world, helps paint a picture of the disease that no single clinic or research group could capture alone.

What will you be asked to share?

Surveys on SDS-GPS cover topics including socio-demographics, medical history in lay terms and diagnostics, treatment and disease progression, access to care, and quality of life. You do not need to look up medical records to participate — surveys are designed to be completed from memory, without medical jargon or lab test results, and you can save your progress and return at any time.

The only test result we ask for, if available, is your genetic testing result that confirms your SDS or related diagnosis. You can upload that anytime. Read more about it in our genetic test report blog post.

We also periodically add new survey modules as research priorities evolve. Right now, until April 30, we offer PROMIS Quality of Life surveys for the first time. Join SDS-GPS to fill them out before the end of April. This set will be offered twice a year, so make sure to check back in April and October every year.

Ready to join?

Creating an account and filling out the onboarding surveys takes about 30–60 minutes, including breaks. If you would like help getting started, our team is available for a Zoom call at your convenience — you can book directly from the SDS-GPS page.

Whether you are newly diagnosed or have been living with SDS for years, your participation makes a real difference. The SDS community is small, and every voice counts.

Join SDS-GPS at www.sdsalliance.org/sds-gps

Want to learn more about data privacy and other aspects of SDS-GPS?

Visit the FAQ section on our SDS-GPS page.

Questions? Contact us at connect@sdsalliance.org or call +1-617-329-1838.

SDS Alliance is a US-based 501(c)(3) nonprofit organization serving the global SDS community.

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