Skip to content

Rare care:reationship between social, nutritional and clinical aspects in Angelman syndrome

Rare care: interrelationships between social determinants, nutritional status and clinical aspects in Angelman syndrome

Status
Recruiting
Phases
Unknown
Study type
Observational
Source
REBEC
Registry ID
RBR-399jydc
Enrollment
Unknown
Registered
2024-11-25
Start date
2024-05-01
Completion date
Unknown
Last updated
2025-10-27

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Angelman Syndrome

Interventions

A total of 400 families of people diagnosed with Angelman Syndrome registered in the Angelman Brasil Association registry will be monitored. Follow-up will take place through a remote meeting lasting
C16.131.260.040
SP6.090.324.478

Sponsors

Universidade Federal do Rio de Janeiro
Lead Sponsor
Instituto de Nutrição Josué de Castro da Universidade Federal do Rio de Janeiro
Collaborator

Eligibility

Age
1 Days to 60 Years

Inclusion criteria

Inclusion criteria: Family members and/or primary caregivers of people with a positive genetic diagnosis for Angelman Syndrome; both sexes; aged between one day and 60 years; resident of Brazil; agreed with the Informed Consent Form

Exclusion criteria

Exclusion criteria: Non-resident Brazilians; presence of comorbidity not related to the syndrome; prematurity; disagree with the Informed Consent Form

Design outcomes

Primary

MeasureTime frame
Characterize the nutritional status of people diagnosed with Angelman Syndrome in Brazil

Secondary

MeasureTime frame
Evaluate dietary intake of people diagnosed with Angelman Syndrome in Brazil;Identify the prevalence of food insecurity prevalence in households of people with Angelman Syndrome in Brazil

Countries

Brazil

Contacts

Public ContactAna Luísa Faller

Instituto de Nutrição Josué de Castro da Universidade Federal do Rio de Janeiro

ana.faller@nutricao.ufrj.br+55 (21) 39386600

Outcome results

None listed

Source: REBEC (via WHO ICTRP)