Trial Completed: Italian Angelman Syndrome Registry (NCT03650569)
WHY IT MATTERS
This completed Italian registry provides real-world data on Angelman Syndrome patients that researchers can use to design better treatments and understand how the condition affects people over time.
Researchers in Italy completed a registry study where they collected information from 82 patients with Angelman Syndrome. A registry is like a database that stores health information to help doctors and scientists learn more about a disease. No patients received any experimental treatment—they just shared their medical information, which is kept private and secure.
NCT ID: NCT03650569 Status: COMPLETED Conditions: Angelman Syndrome Enrollment: 82 Sponsor: FROM- Fondazione per la Ricerca Ospedale di Bergamo- ETS Summary: The Italian Angelman Registry is a national registry for patients with Angelman Syndrome. No experimental intervention is involved in participation. The data provided are stored in the registry according the EU General Data Protection Regulation (GDPR, enforced on 25 May 2018), unless participants wish to withdraw their child/ adult's information from the registry.