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Italian Angelman Syndrome Registry Protocol — RISA  

Angelman Syndrome Clinical Trial

Official title:
Italian Angelman Syndrome Registry Protocol

Clinical Trial 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.

Clinical Trial Description

Parents/caregivers of a child or an adult with Angelman Syndrome living in Italy are eligible to insert data in this registry. The individuals must have a diagnosis of Angelman Syndrome confirmed by genetic testing results. The registry has been launched in February 2018 in coincidence with the International Angelman Day and the recruitment will be open until February 2021. ;

Study Design

Related Conditions & MeSH terms

Clinical Trial Details
NCT number NCT03650569
Study type Observational [Patient Registry]
Source Fondazione per la Ricerca Ospedale Maggiore
Contact
Status Completed
Phase
Start date February 16, 2018
Completion date February 16, 2022
View Details
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