RECRUITING

A Decentralized Clinical Trial to Promote Evidence-Based Care for Underserved Patients With Neurofibromatosis 1

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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

Official Title

A Decentralized Clinical Trial to Promote Evidence-Based Care for Underserved Patients With Neurofibromatosis 1

Quick Facts

Study Start:2024-12-03
Study Completion:2026-08
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06262113

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Currently lives in the United States (including Puerto Rico and other United States territories)
  2. * Has a clinical diagnosis of neurofibromatosis 1
  3. * Does not attend an NF clinic within the Children's Tumor Foundation NF Clinic Network
  4. * Has an in-person, well-person visit with a primary care provider scheduled within 3 months of their consent
  5. * Speaks English or Spanish
  1. * Only one person per household may participate in the study
  2. * Unwilling or unable to give informed consent

Contacts and Locations

Study Contact

Paulina Arias Hernandez, MSW
CONTACT
6177245321
pahernandez@mgb.org
Evan Koch, BA
CONTACT
6177249574
eokoch@mgh.harvard.edu

Principal Investigator

Vanessa Merker, PhD
PRINCIPAL_INVESTIGATOR
Massachusetts General Hospital
Scott Plotkin, MD, PhD
PRINCIPAL_INVESTIGATOR
Massachusetts General Hospital

Study Locations (Sites)

Massachusetts General Hospital
Boston, Massachusetts, 02114
United States

Collaborators and Investigators

Sponsor: Massachusetts General Hospital

  • Vanessa Merker, PhD, PRINCIPAL_INVESTIGATOR, Massachusetts General Hospital
  • Scott Plotkin, MD, PhD, PRINCIPAL_INVESTIGATOR, Massachusetts General Hospital

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2024-12-03
Study Completion Date2026-08

Study Record Updates

Study Start Date2024-12-03
Study Completion Date2026-08

Terms related to this study

Keywords Provided by Researchers

  • Neurofibromatosis
  • NF1
  • Guideline
  • Healthcare
  • PCP
  • Parent
  • Pediatric
  • Primary Care
  • Annual Care
  • Physical Exam
  • Well-Child

Additional Relevant MeSH Terms

  • Neurofibromatosis 1