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NCT06880991 · ClinicalTrials.gov registry record
Development of Patient-Reported Outcome Measures Assessing Tumor Visibility and Appearance Concerns in Neurofibromatosis Type 1: A Qualitative Study
A clinical trial of Neurofibromatosis Type 1 and Neurofibroma, sponsored by National Cancer Institute (NCI).
- Recruiting
- Registry status
- 110
- Enrollment target
- 1
- Study location
NCT06880991: Recruiting study of Neurofibromatosis Type 1 and Neurofibroma, sponsored by National Cancer Institute (NCI).
NCT06880991 is a study of Neurofibromatosis Type 1 and Neurofibroma that is actively recruiting participants, run by National Cancer Institute (NCI). The registered enrollment target is 110 participants, below the 154-participant average among 17 other Neurofibromatosis Type 1 trials with a reported enrollment target (29% lower). The trial reports 1 study location across 1 state. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT06880991, a study of Neurofibromatosis Type 1 and Neurofibroma, is actively recruiting participants, sponsored by National Cancer Institute (NCI).
- RECRUITING
- Registry status
- 110 participants
- Enrollment target
- 1
- Study location
Study Summary
Background: Neurofibromatosis 1 (NF1) is a disease that causes tumors to grow along the nerves. These include plexiform neurofibromas (pNF) and cutaneous neurofibromas (cNF). Both pNF and cNF can be visible to other people. These tumors can affect a person s appearance and quality of life. Researchers want to be able to assess changes in appearance before and after treatment for NF1 tumors. Objective: To see if two questionnaires can help assess people s ratings about the appearance of their pNF and cNF tumors. Eligibility: People aged 8 years and older with pNF and people 12 years and older either with cNF or both pNF and cNF. Adult caregivers of children with pNF and cNF are also needed. Design: Participants will complete questionnaires on paper or by phone, computer, or tablet. They will answer questions about how they look, how they feel, and how they feel about the way they look. Participants will meet in at least 1 remote focus group or individual interview. The meeting will last about 1 hour. Each group will include 3 to 5 people, organized by age: 8 to 11 years, 12 to 17 years, 18 to 29 years, and over 30 years. Adult caregivers will meet in a group with other caregivers. They will discuss their NF1 symptoms; how their tumors look; how they feel about the way their tumors look; and their daily activities. They will give their opinions about 2 questionnaires about appearance. The group and individual meetings will be audio-recorded and transcribed. Information that can reveal individual identities will be removed.
Primary Outcome
The primary endpoints will be the modified measures of tumor visibility resulting from the qualitative data obtained from the focus groups and interviews.
Conditions Studied
Interventions
- OTHER Arm 1
Study Locations (1)
Maryland
- National Institutes of Health Clinical Center - Bethesda
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 110 participants |
| Start Date | 2025-04-29 |
| Est. Completion | 2027-03-31 |
What NCT06880991 shows while recruiting
NCT06880991 is an observational study that tracks outcomes without assigning an intervention. The registered 110 participants enrollment target is mid-sized for trials with a published cap, below the 154-participant average among 17 other Neurofibromatosis Type 1 trials with a reported enrollment target (29% lower).
The record links to 2 conditions, with Neurofibromatosis Type 1 appearing as the primary indexed condition, and to 1 intervention - of which Arm 1 is the first listed.
NCT06880991 reports a single indexed study location in Maryland.
Frequently Asked Questions
What is clinical trial NCT06880991 about?
NCT06880991 is a clinical study titled "Development of Patient-Reported Outcome Measures Assessing Tumor Visibility and Appearance Concerns in Neurofibromatosis Type 1: A Qualitative Study". Background: Neurofibromatosis 1 (NF1) is a disease that causes tumors to grow along the nerves. These include plexiform neurofibromas (pNF) and cutaneous neurofibromas (cNF). Both pNF and cNF can be visible to other people. These tumors can affect a person s appearance and quality of life. Research...
What is the current status of trial NCT06880991?
This trial is currently recruiting. The enrollment target is 110 participants. The study started on 2025-04-29. Estimated completion is 2027-03-31.
What conditions does trial NCT06880991 study?
This clinical trial studies the following conditions: Neurofibromatosis Type 1, Neurofibroma.
What interventions are being tested in trial NCT06880991?
The interventions under investigation include: Arm 1 (OTHER).
Who is sponsoring clinical trial NCT06880991?
This trial is sponsored by National Cancer Institute (NCI), which has 3,257 total clinical trials registered on ClinicalTrials.gov.
Where is trial NCT06880991 being conducted?
This trial has 1 study location across Maryland. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
Learn More About Clinical Trials
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Where NCT06880991's enrollment target sits among peer trials
110 6th of 17 higher than 12 of 17 other Neurofibromatosis Type 1 trials
participants (enrollment target), bucketed by value
Each bar is a band; taller bars hold more other Neurofibromatosis Type 1 trials. The dashed line + filled bar mark this entry. Hover or tap any bar for its full count and share, and where it sits relative to this entry.
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