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Peter Zdziarski: Protecting Patient Data in the Rare Disease Community
Peter Zdziarski/LinkedIn
Feb 15, 2026, 10:43

Peter Zdziarski: Protecting Patient Data in the Rare Disease Community

Peter Zdziarski, Vice President and Marketing Director at Glanzmann’s Research Foundation, shared a post on LinkedIn։

”As a patient with a rare disease, my data is highly valuable.

If you are part of the Glanzmann Thrombasthenia community or the rare disease community at large, yours is too!

Before taking part in one of the many surveys out there, a few things to keep in mind:

  • What will happen to your data, how it will be shared, and for how long it will be retained.

This establishes where your data goes and how long it lives outside of your control.

In rare disease communities, even anonymous data can be sensitive and have a long shelf life.

  • If ‘strong legal or liability language’ seems out of proportion to a ‘simple survey.’

Legalistic language, disclaimers, or liability notices may indicate a higher risk or more extensive data use than the survey itself suggests.

This should trigger a closer look.

  • Who the research partner is and what they gain from the data.

Knowing whether the partner is academic, non-profit, or pharmaceutical can help understand the intent and whether the main advantage is patient-centered, commercial, or a combination of both.

That being said, surveys are important.

When conducted in a transparent and respectful manner, they can increase awareness, inform better research, and give a voice to patients with rare diseases who are often unheard.”

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