Research Engagement With People With Intellectual and Developmental Disabilities (PCORI)

University of Wisconsin (UW)

Status: Completed

Conditions: Chronic Conditions, Multiple; Developmental Disability; Intellectual Disability

Treatments: Other: Health Research ToolKit Development

Study type: Interventional

Funder types: Other

Identifiers

NCT04182347

2018-1215

A176000 (Other Identifier)

EDUC/KINESIOLOGY (Other Identifier)

Details and patient eligibility

About

The objectives of this project are to to build sustainable regional communities of Intellectual or Developmental Disabilities (IDD) stakeholders to provide ongoing input to research priorities, methodological processes, and relevant person-centered health outcomes; leverage existing Special Olympic infrastructure to nationally disseminate the toolkit in order to increase participation and engagement in research and improve health outcomes; conduct comparative effectiveness trials that incorporate people with IDD focusing on their research priorities.

Full description

This project will develop a skilled community of stakeholders through collaboration with Special Olympics to create capacity building working groups. Groups will collaborate to develop stakeholder training modules focused on leadership, research fundamentals, and health. Collaboratively developed trainings will be piloted to support revising of the Toolkit for the engagement of people with IDD in research. A range of stakeholders will be essential members of the team to design and provide critical feedback on the effectiveness of the Toolkit, research priorities, and ecologically valid methodologies. Finally, research priorities will be refined, and the research engagement Toolkit will be nationally disseminated to Special Olympics and relevant community organizations. The toolkit will include necessary training for people with IDD, as well as paid and unpaid caregivers to be engaged partners in research.

Enrollment: 57 patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

Inclusion criteria

• Individuals with Intellectual or Developmental Disabilities (IDD)
• Caregiver or family member of the individual with IDD
• Patients/consumer
• Clinician
• Complete informed consent or assent

Exclusion criteria

Trial design

Primary purpose: Health Services Research

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

---

57 participants in 1 patient group

People with IDD and caregivers

Other group

Treatment:

Other: Health Research ToolKit Development