NCT06262113Completed
A Decentralized Clinical Trial to Promote Evidence-Based Care for Underserved Patients With Neurofibromatosis 1
Source: ClinicalTrials.gov · Last updated 21 Aug 2026
Brief summary (registry, in English)
The goal of this fully decentralized, randomized controlled trial is to compare the efficacy of two educational interventions for individuals with Neurofibromatosis 1 (NF1). The primary objective of the study is to determine which intervention leads to higher rates of evidenced-based health screenings for NF1 patients in primary care settings. Adults with NF1 and parents/guardians of children with NF1 from across the U.S. who do not go to a specialized NF clinic and who have an upcoming annual wellness visits (e.g. an annual physical, a well-child visit, etc.) scheduled with a primary care provider (PCP) are eligible to enroll in the study. To see if you might be eligible, fill out a prescreening survey here: https://redcap.link/mynfguide
- Status (registry)
- Completed
- Study type
- Interventional
- Enrollment
- 294 (actual)
- First submitted
- 30 Jan 2024
- Start date
- 3 Dec 2024
- Primary completion date
- 16 Aug 2026
- Lead sponsor
- Massachusetts General Hospital
- NCT number
- NCT06262113
What you commit to
- Study type: Interventional
- Participants enrolled: 294
- From 3 Dec 2024 to the primary completion date, 16 Aug 2026
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other
- Only one person per household may participate in the study
- Unwilling or unable to give informed consent
Criteria the registry did not label
- Adult Inclusion Criteria:
- Currently lives in the United States (including Puerto Rico and other United States territories)
- Has a clinical diagnosis of neurofibromatosis 1
- Does not attend an NF clinic within the Children's Tumor Foundation NF Clinic Network
- Has an in-person, well-person visit with a primary care provider scheduled within 3 months of their consent
- Speaks English or Spanish
- Parent/Guardian of a Child with NF1 Inclusion Criteria:
- Currently lives in the United States (including Puerto Rico and other United States territories)
- Cares for a child (age \<18 years) with a clinical diagnosis of neurofibromatosis 1
- Does not attend an NF clinic within the Children's Tumor Foundation NF Clinic Network
- Their child has an in-person, well-person visit with a primary care provider scheduled within 3 months of their consent
- Speaks English or Spanish
Sex: All · Does not accept healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Massachusetts General Hospital Coordinator of this site? Confirm its status | Boston | United States | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.