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

No Placebo-Only Group

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 weeks3 visits

Treatment ~ Varies

Follow Up ~ 2 weeks after pcp visit

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

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