Actively Recruiting
A Decentralized Clinical Trial to Promote Evidence-Based Care for Underserved Patients With Neurofibromatosis 1
Led by Massachusetts General Hospital · Updated on 2025-10-03
294
Participants Needed
1
Research Sites
86 weeks
Total Duration
On this page
Sponsors
M
Massachusetts General Hospital
Lead Sponsor
P
Patient-Centered Outcomes Research Institute
Collaborating Sponsor
AI-Summary
What this Trial Is About
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
CONDITIONS
Official Title
A Decentralized Clinical Trial to Promote Evidence-Based Care for Underserved Patients With Neurofibromatosis 1
Who Can Participate
Eligibility Criteria
You may qualify if you...
- 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
- Cares for a child (under 18 years) with a clinical diagnosis of neurofibromatosis 1 (for parent/guardian participants)
You will not qualify if you...
- Only one person per household may participate in the study
- Unwilling or unable to give informed consent
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Massachusetts General Hospital
Boston, Massachusetts, United States, 02114
Actively Recruiting
Research Team
P
Paulina Arias Hernandez, MSW
CONTACT
E
Evan Koch, BA
CONTACT
How is the study designed?
Study Type
INTERVENTIONAL
Masking
DOUBLE
Allocation
RANDOMIZED
Model
PARALLEL
Primary Purpose
HEALTH_SERVICES_RESEARCH
Number of Arms
2
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