Скачать или смотреть Stracyfic - Patient Stratification by Standardization of Image-based Sweat Test for Cystic Fibrosis

This short video tells the story behind a research project that explores the ethical side of personalized medicine. It follows the experience of a parent whose child has long been sick—visiting doctor after doctor without clear answers. Then, a new test is introduced: the β-adrenergic sweat test. It shows how well the body’s chloride channel works, a key marker in diagnosing cystic fibrosis (CF). The test helps doctors understand each patient’s individual biology and whether a treatment is working. That’s personalized medicine—medical care tailored to the person.

But new tests can raise big questions. Patients might wonder: “What is this test? Should I do it? Can I trust it?” This is where our project, Stracyfic, begins.

We study how patients and healthcare professionals feel about this new diagnostic test. We ask what builds trust, what information people need, and how to support real choice. Using interviews and surveys in several countries, we explore how trust and autonomy play a role in medical decision-making.

Our first findings show: when patients are informed early and clearly, they feel safer and more in control. Trust grows. And when trust is present, communication improves—and care gets better.

This ethics research is part of the larger Stracyfic project, which aims to bring a new CF diagnostic tool into clinical practice. Our role is to make sure the human side of that process is understood—from values to everyday experiences.

This ethical project brings together researchers, clinicians, and patient organizations from France, Belgium, Italy, and Germany.

Stracyfic is part of a European collaboration on personalized medicine, co-funded by ERA PerMed and the European Union.

More on the project: https://www.eppermed.eu/funding-proje...