Clinical trial NCT04182347: Research Engagement With People With Intellectual and Developmental Disabilities
Official title: Engagement in Healthy Communities for People With Intellectual and Developmental Disabilities
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Intellectual Disability
Developmental Disability
Chronic Conditions, Multiple
Keywords: Individuals with Intellectual or Developmental Disabilities
Research
ToolKit
Health Disparities
Engagement
Lead sponsor: University of Wisconsin, Madison
Sponsor class: OTHER
First posted: 2019-12-02
Enrollment: 57
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Allocation: NA
Intervention model: SINGLE_GROUP
Intervention model description: A ToolKit will be created to support the engagement of people with IDD in the development of research. The toolkit will be the first of its kind to provide an accessible, structured process with the necessary training for people with IDD and people with IDD's paid and unpaid caregivers to be engaged partners. Learning activities are focused on leadership, information about research, health for individuals with IDD. Learning activities will include topics:

What is health research? What is the health research process? How can individuals with IDD be involved in health research? Where is research happening? How to think like a researcher. Creating health stories for research and care advocacy.

The learning activities will teach individuals with IDD information and allow participants to practice the learning.
Primary purpose: HEALTH_SERVICES_RESEARCH

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.

Eligibility criteria: 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:

-

Primary outcomes:
measure: READI Curriculum Development
timeFrame: Up to one year
measure: Health Research Infographic Development
timeFrame: Up to one year
Secondary outcomes:
Other outcomes:
Locations:
city: Madison
country: United States
facility: Waisman Center
state: Wisconsin
Study officials:
References: