iCanCope With NF: Innovating an Efficacious Digital Self-management and Transitional Care Program for Adolescents With Neurofibromatosis
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: iCanCope-NF Youth app, iCanCope-NF Youth app + CM.
- Who it may be relevant to
- Registry conditions: Neurofibromatosis 1. Basic parameters: 12 years — 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Center list to be confirmed — check the primary protocol.
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Overview
Neurofibromatosis Type 1 (NF1) often significantly impairs the mental health, social life, self-esteem, and quality of life of adolescent patients. These impacts can be made worse with the experience of NF1-related pain. Nearly three-quarters (73%) of caregivers report that pain interferes with their child's daily functioning, including their mental health, activity, sleep, relationships, and school attendance. Our team has developed the first mobile self-management platform app for adults with NF1-related pain, called iCanCope with NF. It is designed to help people to track their pain, sleep, mood, exercise, and energy level. It helps them set goals, gives suggestions about how to deal with NF1-related pain, and connects them with other individuals living with NF. The goal of this project is to test out a modified version of iCanCope with NF, for youth.
Interventions
- Other iCanCope-NF Youth app
The iCanCope digital app offers symptom tracking, self-management skills training, goal setting, and disease education tailored for neurofibromatosis for youth. - Other iCanCope-NF Youth app + CM
The iCanCope digital app offers symptom tracking, self-management skills training, goal setting, and disease education tailored for neurofibromatosis for youth. In addition to the standardized orientation and push notifications, this app will also allow users to earn incentives aligned with their program engagement.
Primary outcome measures
- Feasibility of iCanCope NF [Time frame: 8 weeks]
Secondary outcome measures (7)
- Pain Interference [Time frame: 8 weeks]
- Pain Severity [Time frame: 8 weeks]
- Pain management [Time frame: 8 weeks]
- Depressive symptoms [Time frame: 8 weeks]
- Anxiety [Time frame: 8 weeks]
- Transition readiness [Time frame: 8 weeks]
- Health-related quality of life [Time frame: 8 weeks]
Eligibility criteria
Inclusion criteria
- Diagnosed with NF1
- Experience of NF1-related pain or discomfort that interfered with function over the past 2 weeks
- Able to speak and read English
Exclusion criteria
- Moderate to severe cognitive impairments that would prevent independent use the iCanCope intervention, as determined through consultation with their health care provider
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Allocation
- Randomized
- Model
- Parallel assignment
- Masking
- Open label
- Primary purpose
- Treatment
Study locations
Center list to be confirmed — check the primary protocol.
Identifiers
NCT: NCT07077408 · 1000081822