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Recruiting NCT06262113

NCT06262113 A Decentralized Clinical Trial to Promote Evidence-Based Care for Underserved Patients With Neurofibromatosis 1

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Clinical Trial Summary
NCT ID NCT06262113
Status Recruiting
Phase
Sponsor Massachusetts General Hospital
Condition Neurofibromatosis 1
Study Type INTERVENTIONAL
Enrollment 294 participants
Start Date 2024-12-03
Primary Completion 2026-06

Eligibility & Interventions

Sex All sexes
Min Age N/A
Max Age N/A
Study Type INTERVENTIONAL
Interventions
Letters about NF1 Care (Content Type 1)Letters about NF1 Care (Content Type 2)

Eligibility Fast-Check

Enter your details for a quick preliminary check. This does not replace medical advice.

What to Expect as a Participant

You will actively receive the study intervention — which may be a drug, biologic, device, or procedure.

This trial targets 294 participants in total. It began in 2024-12-03 with a primary completion date of 2026-06.

⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.

Brief 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

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

Contact & Investigator

Central Contact

Paulina Arias Hernandez, MSW

✉ pahernandez@mgb.org

📞 6177245321

Principal Investigator

Vanessa Merker, PhD

PRINCIPAL INVESTIGATOR

Massachusetts General Hospital

Frequently Asked Questions

Who can join the NCT06262113 clinical trial?

This trial is open to participants of all sexes, studying Neurofibromatosis 1. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.

Is NCT06262113 currently recruiting?

Yes, NCT06262113 is actively recruiting participants. Contact the research team at pahernandez@mgb.org for enrollment information.

Where is the NCT06262113 trial being conducted?

This trial is being conducted at Boston, United States.

Who is sponsoring the NCT06262113 clinical trial?

NCT06262113 is sponsored by Massachusetts General Hospital. The principal investigator is Vanessa Merker, PhD at Massachusetts General Hospital. The trial plans to enroll 294 participants.

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ClinicalMetric — Independent clinical trial intelligence platform. Not affiliated with NIH, ClinicalTrials.gov, the U.S. FDA, or any pharmaceutical company, hospital, or clinical research organization. Trial data is sourced from ClinicalTrials.gov for informational purposes only and does not constitute medical advice. Do not make any treatment, enrollment, or health decisions based solely on information found here — always consult a qualified healthcare professional. Full Disclaimer  ·  Last Reviewed: April 2026  ·  Data Methodology