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Behavioural Intervention
Intervention Arm 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
Study 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.Check my eligibility
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.See study design
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 belowSelect...
I have been diagnosed with neurofibromatosis 1.
Timeline
Screening ~ 3 weeks3 visits
Treatment ~ Varies
Follow Up ~ 2 weeks after pcp visit
Screening ~ 3 weeks
Treatment ~ Varies
Follow Up ~2 weeks after pcp visit
Treatment Details
Study Objectives
Outcome measures can provide a clearer picture of what you can expect from a treatment.Primary outcome measures
Receipt of Recommended NF1 Health Screenings
Secondary outcome measures
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 moreTrial 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
550 Previous Clinical Trials
29,996,588 Total Patients Enrolled
Massachusetts General HospitalLead Sponsor
2,929 Previous Clinical Trials
13,197,945 Total Patients Enrolled
2 Trials studying Neurofibromatosis
151 Patients Enrolled for Neurofibromatosis
Vanessa Merker, PhDPrincipal InvestigatorMassachusetts General Hospital
Frequently Asked Questions
These questions and answers are submitted by anonymous patients, and have not been verified by our internal team.
Are there currently open spots for participants in this ongoing clinical trial?
"As per clinicaltrials.gov, the investigation is not in active pursuit of volunteers. It was initially shared on 11/1/2024 and last revised on 2/8/2024. Although this specific trial no longer accepts applicants, there are currently 49 alternative clinical trials actively seeking participants."
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