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

Launched by MASSACHUSETTS GENERAL HOSPITAL · Feb 8, 2024

Keywords

ClinConnect Summary

This clinical trial is looking to see which of two educational programs helps people with Neurofibromatosis 1 (NF1) get better health screenings during their regular doctor visits. NF1 is a genetic condition that can cause skin changes and other health issues. The study aims to help patients understand the importance of these screenings, especially those who may not have access to specialized clinics.

To be eligible for the trial, participants must either be adults with a diagnosis of NF1 living in the U.S. or parents/guardians of children with NF1. They should not be visiting a specialized NF clinic and must have an upcoming wellness visit with their primary care doctor within three months. Participants can expect to receive information about their health and the study will help determine which educational approach works best. It's important to know that only one person from each household can join the study, and participants need to be comfortable giving their consent to take part.

Gender

ALL

Eligibility criteria

• 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 a clinical diagnosis of neurofibromatosis 1
• • Does not attend an NF clinic within the Children's Tumor Foundation NF Clinic Network
• • Their child has an in-person, well-person visit with a primary care provider scheduled within 3 months of their consent
• • Speaks English or Spanish
• Exclusion Criteria:
• • Only one person per household may participate in the study
• • Unwilling or unable to give informed consent