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NCT06262113

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

Completed
NAAll AgesInterventionalHealth services
Massachusetts General Hospital
~294 participants
Updated 2026-08-21 on ClinicalTrials.gov
What's tested:Letters about NF1 Care (Content Type 1)Letters about NF1 Care (Content Type 2)

At a glance

Recruiting sites
0 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Receipt of Recommended NF1 Health Screenings
Measured over 2 weeks after PCP visit

Conditions

Neurofibromatosis 1

Explore related trials

Neurofibromatosis Type 1

Where it's being run

1 sites across 1 states
Massachusetts1

Study leadership

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

Who to contact

This trial hasn't published a contact. View it on ClinicalTrials.gov

Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

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
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

Only one person per household may participate in the study
Unwilling or unable to give informed consent

What this trial measures

  • Receipt of Recommended NF1 Health Screenings2 weeks after PCP visit

    Number of AAP and ACMG recommended health screenings received by the person with NF1 at the annual wellness visit with their PCP, as assessed by patient/parent self-report