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.
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 Type
OBSERVATIONAL
Enrollment
82
FROM - Research Foundation Bergamo Hospital - ETS, Bergamo, Italy
Bergamo, Italy
Medical and behavioral problems
Medical and behavioral problems associated with Angelman syndrome and their prevalence.
Time frame: 3 years
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