RECRUITING

Future Planning and Well-Being for Individuals With Intellectual Disabilities and Family Caregivers

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

This study will compare the effectiveness of a web-based long-term care planning tool (Map Our Life) partnered with traditional case management services to traditional case management services partnered with an attention-control Centers for Disease Control and Prevention (CDC) sponsored website on health promotion for people with disabilities. The goal of this clinical trial is to promote long-term care (LTC) knowledge and planning among individuals with intellectual/developmental disabilities (IDD) and their family caregivers to improve social supports, health, and quality of life outcomes.

Official Title

Future Planning and Well-Being for Individuals With Intellectual Disabilities and Family Caregivers

Quick Facts

Study Start:2023-12-22
Study Completion:2029-04-30
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06065527

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:18 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Family caregivers of individuals with intellectual and/or developmental disabilities living in a community setting
  2. * Ability to speak English or Spanish
  3. * Access to a tablet, computer, or smartphone
  1. * Speaks a language other than English or Spanish
  2. * Does not have access to a tablet, computer, or smartphone
  3. * Caregivers who care for individuals with intellectual and developmental disabilities who are less than 10 years of age.
  4. * Special populations such as: fetuses, prisoners, or other institutionalized individuals

Contacts and Locations

Study Contact

Sophia Jan, MD, MSHP
CONTACT
(516) 465-4377
sjan1@northwell.edu

Study Locations (Sites)

Cohen Children's Medical Center
New Hyde Park, New York, 11040
United States

Collaborators and Investigators

Sponsor: Northwell Health

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2023-12-22
Study Completion Date2029-04-30

Study Record Updates

Study Start Date2023-12-22
Study Completion Date2029-04-30

Terms related to this study

Keywords Provided by Researchers

  • Caregiver
  • case management

Additional Relevant MeSH Terms

  • Intellectual Disability