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Behavioural Intervention

Educational Letters for Neurofibromatosis

N/A
Waitlist Available
Led By Vanessa Merker, PhD
Research Sponsored by Massachusetts General Hospital
Eligibility Criteria Checklist
Specific guidelines that determine who can or cannot participate in a clinical trial
Must have
Adult: Has a clinical diagnosis of neurofibromatosis 1
Be older than 18 years old
Timeline
Screening 3 weeks
Treatment Varies
Follow Up at baseline and 2 weeks after pcp visit
Awards & highlights

Summary

This trial aims to compare two educational interventions for individuals with Neurofibromatosis 1 (NF1) to see which one helps more in getting proper health screenings for NF1 patients in regular doctor

Who is the study for?
This trial is for adults with Neurofibromatosis 1 (NF1) and parents or guardians of children with NF1 in the U.S. who don't attend a specialized NF clinic but have an upcoming annual check-up with their primary care provider.
What is being tested?
The study aims to see which of two educational letters about NF1 care leads to more evidence-based health screenings at primary care visits. It's a randomized controlled trial, meaning people are put into groups by chance.
What are the potential side effects?
Since this trial involves educational interventions rather than medical treatments, there are no direct physical side effects expected from participating.

Eligibility Criteria

Inclusion Criteria

You may be eligible if you check “Yes” for the criteria below
Select...
I have been diagnosed with neurofibromatosis 1.

Timeline

Screening ~ 3 weeks
Treatment ~ Varies
Follow Up ~2 weeks after pcp visit
This trial's timeline: 3 weeks for screening, Varies for treatment, and 2 weeks after pcp visit for reporting.

Treatment Details

Study Objectives

Study objectives can provide a clearer picture of what you can expect from a treatment.
Primary study objectives
Receipt of Recommended NF1 Health Screenings
Secondary study objectives
Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Clinician and Group Survey Version 4.0 (Beta): How Well Providers Communicate With Patients Subscale
Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Clinician and Group Survey Version 4.0 (Beta): Providers' Use of Information to Coordinate Patient Care Subscale
Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Clinician and Group Survey Version 4.0 (Beta): Rating of the Visit
+1 more

Trial Design

2Treatment groups
Experimental Treatment
Group I: Intervention ArmExperimental Treatment1 Intervention
Group II: Enhanced Usual Care ArmExperimental Treatment1 Intervention

Find a Location

Who is running the clinical trial?

Patient-Centered Outcomes Research InstituteOTHER
568 Previous Clinical Trials
27,249,049 Total Patients Enrolled
Massachusetts General HospitalLead Sponsor
2,993 Previous Clinical Trials
13,230,361 Total Patients Enrolled
2 Trials studying Neurofibromatosis
151 Patients Enrolled for Neurofibromatosis
Vanessa Merker, PhDPrincipal InvestigatorMassachusetts General Hospital
~240 spots leftby Jun 2026
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