Web-based planning tool for caregivers of individuals with intellectual disabilities
Future Planning and Well-Being for Individuals With Intellectual Disabilities and Family Caregivers
NA · Northwell Health · NCT06065527
This study is testing a new online planning tool for caregivers of individuals with intellectual disabilities to see if it helps them make better long-term care decisions compared to regular support services.
Quick facts
| Phase | NA |
|---|---|
| Study type | Interventional |
| Enrollment | 1050 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Northwell Health (other) |
| Locations | 1 site (New Hyde Park, New York) |
| Trial ID | NCT06065527 on ClinicalTrials.gov |
What this trial studies
This study evaluates the effectiveness of a web-based long-term care planning tool called Map Our Life, combined with traditional case management services, compared to standard case management services paired with an attention-control website. The aim is to enhance long-term care knowledge and planning for individuals with intellectual/developmental disabilities (IDD) and their family caregivers. By focusing on health emergency preparedness and decision-making, the study seeks to improve health outcomes and quality of life for both caregivers and individuals with IDD. Participants will be randomly assigned to either the intervention or control group, with assessments conducted at multiple time points.
Who should consider this trial
Good fit: Ideal candidates include family caregivers of individuals with intellectual and/or developmental disabilities who can communicate in English or Spanish and have access to digital devices.
Not a fit: Patients who do not have access to a tablet, computer, or smartphone, or who care for individuals under 10 years of age may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could significantly improve the health and quality of life for individuals with intellectual disabilities and their caregivers.
How similar studies have performed: Other studies have shown promise in using web-based tools for health promotion and caregiver support, indicating potential success for this approach.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Family caregivers of individuals with intellectual and/or developmental disabilities living in a community setting * Ability to speak English or Spanish * Access to a tablet, computer, or smartphone Exclusion Criteria: * Speaks a language other than English or Spanish * Does not have access to a tablet, computer, or smartphone * Caregivers who care for individuals with intellectual and developmental disabilities who are less than 10 years of age. * Special populations such as: fetuses, prisoners, or other institutionalized individuals
Where this trial is running
New Hyde Park, New York
- Cohen Children's Medical Center — New Hyde Park, New York, United States (RECRUITING)
Study contacts
- Study coordinator: Sophia Jan, MD, MSHP
- Email: sjan1@northwell.edu
- Phone: (516) 465-4377
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Intellectual Disability, Caregiver, case management