Jorn Schenk
Zurich, ZH, Switzerland
Last Updated: 09/26/2026
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Found 8 publications
Long-term effectiveness and safety outcomes in adults with Fabry disease treated with agalsidase alfa: 20 years of data from the Fabry Outcome Survey.
Journal: European journal of clinical investigation
Published: June 26, 2025
Two decades of experience of the Fabry Outcome Survey provides further confirmation of the long-term effectiveness of agalsidase alfa enzyme replacement therapy.
Journal: Molecular genetics and metabolism reports
Published: January 22, 2025
Twelve Years of the Gaucher Outcomes Survey (GOS): Insights, Achievements, and Lessons Learned from a Global Patient Registry.
Journal: Journal of clinical medicine
Published: April 19, 2024
Genetic newborn screening and digital technologies: A project protocol based on a dual approach to shorten the rare diseases diagnostic path in Europe.
Journal: PloS one
Published: September 19, 2023
Twenty years of the Fabry Outcome Survey (FOS): insights, achievements, and lessons learned from a global patient registry.
Journal: Orphanet journal of rare diseases
Published: February 15, 2022
Impact of the COVID-19 pandemic on the standard of care for patients with lysosomal storage diseases: A survey of healthcare professionals in the Fabry, Gaucher, and Hunter Outcome Survey registries.
Journal: Molecular genetics and metabolism reports
Published: July 27, 2021
Development and validation of Gaucher disease type 1 (GD1)-specific patient-reported outcome measures (PROMs) for clinical monitoring and for clinical trials.
Journal: Orphanet journal of rare diseases
Published: July 14, 2021
Evaluating enzyme replacement therapies for Anderson-Fabry disease: commentary on a recent report.
Journal: Genetics and molecular biology
Published: November 28, 2017
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Last Updated: 09/26/2026