Research Engagement With People With Intellectual and Developmental Disabilities

Not Applicable

Completed

• Conditions: Intellectual Disability; Chronic Conditions, Multiple; Developmental Disability
• Interventions: Other: Health Research ToolKit Development

• Registration Number: NCT04182347
• Lead Sponsor: University of Wisconsin, Madison

Brief Summary

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.

Detailed 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.

Study Timeline

• Study First Submitted: 2019-10-22
• Study First Submitted QC: 2019-11-26
• Study First Posted: 2019-12-02
• Study Start: 2020-01-01
• Primary Completion: 2020-10-31
• Study Completion: 2020-10-31
• Status Verified: 2020-12
• Last Update Submitted: 2020-12-08
• Last Update Posted: 2020-12-09

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 57

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

Study & Design

• Study Type: INTERVENTIONAL
• Study Design: SINGLE_GROUP

Arm && Interventions

Group	Intervention	Description
People with IDD and caregivers	Health Research ToolKit Development	-

Primary Outcome Measures

Name	Time	Method
Health Research Infographic Development	Up to one year	The development of health research infographics incorporating stakeholders as part of the development team that will bridge knowledge dissemination between researchers and people with IDD.
READI Curriculum Development	Up to one year	The development of an online health research curriculum incorporating stakeholders as part of the development team.

Trial Locations

Locations (1)

Waisman Center; 🇺🇸 Madison, Wisconsin, United States