Angelman Natural History Study - FAST Spain

Launched by PUERTA DE HIERRO UNIVERSITY HOSPITAL · Oct 30, 2023

Keywords

ClinConnect Summary

The Angelman Natural History Study - FAST Spain is a research study that aims to understand how Angelman Syndrome (AS) progresses over time in people who are not receiving any specific treatments for the condition. By observing patients with Angelman Syndrome, researchers hope to gather important information that can help in designing future clinical trials to test new treatments. This study is currently looking for participants of all ages, from just 3 months to 99 years old, who have been diagnosed with Angelman Syndrome and have confirmation of their diagnosis.

To be eligible for this study, participants need to have a guardian who can give consent and ensure they attend scheduled visits and follow the study procedures. However, individuals with other significant health issues or who are involved in other drug studies are not able to participate. Those who join can expect to have regular check-ins and assessments to help researchers learn more about the condition and how it affects different individuals over time. This is an important step in improving care and finding potential treatments for Angelman Syndrome in the future.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 1. Male or female between 3 months and 99 years of age.
• • 2. Clinical diagnosis of Angelman Syndrome and molecular confirmation of the diagnosis.
• • 3. The participant has an acceptable guardian capable of giving consent on behalf of the participant,
• • 4. Willingness and ability of their guardians to comply with scheduled visits, treatment plan, laboratory tests, and other study procedures.
• Exclusion Criteria:
• • 1. Patients with any comorbidity that, in the clinical judgment of the principal investigator, may affect the results of the study. Any confirmed chronic or acute condition or illness affecting any system(s) that could interfere with study results and/or compliance with study procedures is included.
• • 2. Patients who are participating in parallel studies with investigational drugs.
• • 3. Unwillingness or inability of their guardians to follow the procedures outlined in the protocol.