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Understanding Tumor Visibility and Appearance in Neurofibromatosis Type 1

This study aims to understand how people with Neurofibromatosis Type 1 (NF1) describe the appearance of their tumors (plexiform neurofibromas or pNF, and cutaneous neurofibromas or cNF). Researchers want to see if two questionnaires, the Tumor Visibility Rating Scale (TVRS) for pNF and cNF, can accurately capture how visible these tumors are and how they affect a person's appearance. This will help doctors better understand the impact of NF1 and measure changes after treatment. You can join if you are 5 years or older with NF1 and visible pNF or cNF, or if you are a caregiver of a child with NF1. The study is observational, meaning it looks at existing conditions rather than testing a new treatment. The goal is to improve how we measure the effects of NF1 on appearance.

Study design
This is an observational study planning to include 110 participants. It is not testing a new treatment but rather gathering information through questionnaires and interviews.
What's involved
Participants will complete questionnaires and may take part in focus groups or interviews. This can be done on paper, by phone, computer, or tablet.
Compensation
Not stated in the trial record.
Follow-up
The study will evaluate new tumor visibility throughout the study period, but a specific follow-up duration is not mentioned.

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NCT06880991

Development of Patient-Reported Outcome Measures Assessing Tumor Visibility and Appearance Concerns in Neurofibromatosis Type 1: A Qualitative Study

Recruiting
Not specifiedAges 5+Observational
National Cancer Institute (NCI)
~110 participants
Updated 2026-08-14 on ClinicalTrials.gov
What's tested:Arm 1

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Evaluate new tumor visibility (DRS-pNF, DRS-cNF self-report/parent-report); to select the most appropriate items to assess these constructs in NF1 based on qualitative feedback from children and adults with NF1 and visible pNF or cNF
Measured over throughout the study

Conditions

Neurofibromatosis Type 1
Neurofibroma

Explore related trials

NeurofibromaNeurofibromatosis Type 1

Where it's being run

1 sites across 1 states
Maryland1

Study leadership

  • Staci M Peron, Ph.D. · PRINCIPAL_INVESTIGATOR · National Cancer Institute (NCI)

Who to contact

Staci M Peron, Ph.D.
[email protected]
(240) 760-6025
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

Participants must self-report a diagnosis of NF1 OR be the caregiver of a child with NF1 (5-17 years old with plexiform neurofibroma \[pNF\] or 12-17 years old with cutaneous neurofibroma \[cNF\])
Participants with NF1 must self-report a pNF and/or cNF tumor(s) that is visible to that individual OR others
Caregivers of a child with NF1 must report a pNF and/or cNF tumor(s) that the child has that is visible to the child OR others
Age requirements:
\>= 8 years old (participants with pNF)
\>= 12 years old (participants with cNF)
\>= 12 years old (participants with pNF and cNF)
\>= 18 years (caregivers)
Access to a device with internet
Ability to understand English and comfort discussing their medical condition in English
The ability of adult participant or caregiver of minor participants to understand and the willingness to sign a written informed consent document

Exclusion

Physical or cognitive limitations that would prevent them from being able to participate in a focus group or interview, or unwillingness to do so
Since we will aim to have no less than 25 percent of participants from underrepresented\* groups, individuals from represented groups may not be able to participate after we have reached the maximum target for represented groups. Consistent with best practices for scale development and validation, this will help ensure that the measures are appropriate for people from a variety of backgrounds.
If saturation has been met within a particular age group, potential participants from that completed age group will no longer be eligible.

What this trial measures

  • Evaluate new tumor visibility (DRS-pNF, DRS-cNF self-report/parent-report); to select the most appropriate items to assess these constructs in NF1 based on qualitative feedback from children and adults with NF1 and visible pNF or cNFthroughout the study

    The primary endpoints will be the modified measures of tumor visibility resulting from the qualitative data obtained from the focus groups and interviews.