A Decentralized Clinical Trial to Promote Evidence-Based Care for Underserved Patients With Neurofibromatosis 1
Massachusetts General Hospital
Summary
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
Description
Background: The majority of individuals with Neurofibromatosis 1 (NF1) in the United States lack access to specialized NF1 clinics and consequently don't receive care aligned with national recommendations. To address this gap in care, researchers are evaluating two interventions to determine which one helps people get recommended NF1-related health screenings at their annual wellness visit with a primary care provider. Methods: Participants (adult patients or parents) who enroll in the study will complete baseline survey assessments online before their PCP visit and then be randomized to one…
Eligibility
- Age range
- Not specified
- Sex
- All
- Healthy volunteers
- No
Adult Inclusion Criteria: * 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 Parent/Guardian of a Child with NF1 Inclusion Criteria: * Currently lives in the United States (including Puerto Rico and other United States territories) * Cares for a child (age \<18 years) with…
Interventions
- OtherLetters about NF1 Care (Content Type 1)
Participants will receive two letters about NF1 care, one for themselves and one for their primary care clinician, to read in advance of the patient's annual wellness visit
- OtherLetters about NF1 Care (Content Type 2)
Participants will receive two letters about NF1 care, one for themselves and one for their primary care clinician, to read in advance of the patient's annual wellness visit
Location
- Massachusetts General HospitalBoston, Massachusetts