Trials / Completed
CompletedNCT03650569
Italian Angelman Syndrome Registry
Italian Angelman Syndrome Registry Project
- Status
- Completed
- Phase
- —
- Study type
- Observational
- Enrollment
- 82 (actual)
- Sponsor
- FROM- Fondazione per la Ricerca Ospedale di Bergamo- ETS · Academic / Other
- Sex
- All
- Age
- 1 Day
- Healthy volunteers
- Not accepted
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.
Detailed 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.
Conditions
Timeline
- Start date
- 2018-02-16
- Primary completion
- 2021-02-16
- Completion
- 2022-02-16
- First posted
- 2018-08-28
- Last updated
- 2026-02-27
Locations
1 site across 1 country: Italy
Source: ClinicalTrials.gov record NCT03650569. Inclusion in this directory is not an endorsement.