Self-reported access to specialty clinics and receipt of health surveillance among U.S. patients with neurofibromatosis 1: a national survey.
Vanessa L Merker, Yidan Ma, Lori B Chibnik...
https://pubmed.ncbi.nlm.nih.gov/40241092Actively Recruiting
Phase Not Applicable
All Genders
ID06262113
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
8 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
Researchers are evaluating two different educational letter interventions to improve the rate of recommended health screenings for people with Neurofibromatosis 1 (NF1) who do not usually attend specialized NF clinics. The study focuses on both adults with NF1 and parents or guardians of children with NF1 across the U.S. The goal is to find out which approach better supports patients during their annual wellness visits with primary care providers by promoting evidence-based care. Participants will be randomly assigned to receive one of two types of letters about NF1 care, one addressed to themselves and one to their primary care clinician. These letters provide information about NF1 care recommendations to be reviewed before the participant's upcoming annual wellness visit. After this visit, participants will complete a follow-up online survey, and a small group may take part in virtual interviews to share their experiences. The study is fully decentralized and does not require any visits to Massachusetts General Hospital. Participants will complete online surveys before and after their wellness visit to assess the impact of the interventions. The main outcome measured is whether participants received the recommended NF1 health screenings within two weeks after their primary care visit. Secondary measures include patient activation and satisfaction with care. Throughout the study, all interactions and data collection are done remotely, and participation continues until after the follow-up survey is completed.
CONDITIONS
Brief Title
A Decentralized Clinical Trial to Promote Evidence-Based Care for Underserved Patients With Neurofibromatosis 1
Who Can Participate
All Genders
Eligibility Criteria
You may qualify if you...
- Currently lives in the United States, including Puerto Rico and other territories
- Has a clinical diagnosis of neurofibromatosis 1 (adult participants)
- 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 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...
- More than one person from the same household may not participate
- Unwilling or unable to give informed consent
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
1
2
3
Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (online)
Treatment
Duration - Up to 3 months until the annual wellness visit
Participants receive letters about NF1 care to read before their annual wellness visit with a primary care provider.
1 baseline online survey and 1 follow-up online survey 2 weeks after the visit
Trial Site Locations
Total: 1 location
1
Massachusetts General Hospital
Boston, Massachusetts, United States, 02114
Actively Recruiting
Loading map...
Research Team
P
Paulina Arias Hernandez, MSW
E
Evan Koch, BA
How is the study designed?
Study Type
INTERVENTIONAL
Masking
DOUBLE
Allocation
RANDOMIZED
Model
PARALLEL
Primary Purpose
HEALTH_SERVICES_RESEARCH
Number of Arms
2
Similar Trials
Frequently Asked Questions
Have more questions? Get in touch with our team for quick support
Not the Right Trial for You?
Explore thousands of other clinical trials that might be a better match.
Sign up to get personalized trial recommendations delivered to your inbox.
Already have an account? Log in here
Published Research Related To This Trial
Increasing access to specialty care for rare diseases: a case study using a foundation sponsored clinic network for patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis.
Vanessa L Merker, Annie Dai, Heather B Radtke...
https://pubmed.ncbi.nlm.nih.gov/30157837Awareness and agreement with neurofibromatosis care guidelines among U.S. neurofibromatosis specialists.
Vanessa L Merker, Pamela Knight, Heather B Radtke...
https://pubmed.ncbi.nlm.nih.gov/35144646