|

AUCD Community Inclusion

AUCD’s Community Inclusion Team supports the University Centers for Excellence in Developmental Disabilities (UCEDD) Network in partnership with the Administration for Community Living.

Learn More
|

AUCD Maternal and Child Health Engagement

AUCD’s Maternal and Child Health Engagement supports the Autism CARES Programs, including LEND and DBP Programs.

Learn More
|

AUCD Public Health

AUCD’s Public Health Team works to create health promotion and public health efforts that include people with disabilities.

Learn More
|

AUCD Emerging Leaders Community

AUCD Emerging Leaders are a part of a community that includes trainees, early career professionals, self-advocates, and family members from AUCD member Centers and Programs.

Learn More

Donate

Project

Understanding and Enhancing the Medical Experience of Patients and families with Angelman Syndrome

Center:

CA-Tarjan Center UCLA, UCEDD

Fiscal Year:

2026

Contact Information:

Maya Ayoub
[email protected]

Project Description:

This CDI-Supported study focuses on semi-structured interviews with parents of individuals with Angelman Syndrome. The first part of this study will involve collaborative meetings with the Angelman Syndrome Foundation (ASF) to identify key barriers in clinical care interactions. This will be followed by focus groups with semi-structured group interviews for AS families and individuals, in order to identify family and patient level factors affecting care, pulling themes with regards to barriers in clinical care interactions.

Keyword(s):

Developmental Disabilities, Children, Adolescents, and Young Adults with Special Health Care Needs

Core Function(s):

Performing Research or Evaluation

Area of Emphasis

Health-Related Activities

Target Audience:

Family Members/Caregivers

Unserved or Under-served Populations:

Specific Groups

Primary Target Audience Geographic Descriptor:

National