Clinical trials
Neurofibromatosis clinical trials
Below are recruiting neurofibromatosis clinical trials, each written for real people, not researchers. We’re tracking 37 recruiting studies, each written for real people, not researchers, below.
Recruiting studies
- NCT01885767Recruiting
Neurofibromatosis registry for NF1, NF2, and Schwannomatosis
This trial is a patient registry portal for people diagnosed with neurofibromatosis types NF1, NF2, or schwannomatosis. By joining, you help researchers collect real-world information that may guide future studies and care.
New York, New YorkAges Any age - NCT06961565RecruitingPhase 1
Study of PAS-004 for adults with NF1 and plexiform neurofibromas
This trial tests an oral medication called PAS-004 for adults with Neurofibromatosis Type 1 who have at least one symptomatic plexiform neurofibroma that cannot be surgically removed. The goal is to see if the drug can shrink these tumors or improve symptoms, and to understand side effects.
Birmingham, AlabamaAges 18 years+ - NCT06515860Enrolling by invitation
NF1 Tumor Early Detection Study for Adults
This study is looking for adults with NF1 who have had a plexiform neurofibroma. It aims to find better ways to detect tumors early, which could help with treatment decisions.
Boston, MassachusettsAges 18 years+ - NCT05238909Enrolling by invitation
Tracking tumor burden in people with NF1
This study looks for better ways to measure how much tumor activity people with neurofibromatosis type 1 (NF1) have over time. The goal is to develop “biomarkers,” which are test results that may help doctors track disease more easily.
Chicago, IllinoisAges Any age - NCT05331105RecruitingPhase 2
Drug for adults with NF1 and non-surgically treatable nerve tumors
This Phase 2 trial tests HL-085 in adults with neurofibromatosis type 1 (NF1) who have a nerve tumor (plexiform neurofibroma) that cannot be removed by surgery and causes symptoms. It aims to shrink or control the tumor by measuring changes on MRI and monitoring side effects.
Shanghai, Shanghai MunicipalityAges 18–80 - NCT07233408Recruiting
Online tool to help adults with neurofibromatosis 1 and low health literacy
This study tests an online platform designed to help adults with neurofibromatosis 1 (NF1) who have low health literacy. The goal is to make it easier to get evidence-based care. You may be a good fit if you have an upcoming checkup with your primary care doctor.
Boston, MassachusettsAges 18 years+ - NCT07221331Recruiting
Neurofibromatosis type 1 study in Egypt
This study looks at how neurofibromatosis type 1 (NF1) affects people in Egypt, including how it progresses and how it is managed. Researchers will review medical records of patients diagnosed with NF1 between 2010 and 2023 to learn more about the condition.
Al MansurahAges Any age - NCT07088991Recruiting
Study of adults with NF1 and plexiform neurofibromas in Russia
This study is collecting information about adults in Russia with Neurofibromatosis type 1 who have symptomatic plexiform neurofibromas and have not yet been treated with a MEK inhibitor. It aims to better understand the condition and its treatment in real-world settings.
ArkhangelskAges Any age - NCT06880991Recruiting
Study on visible tumors in neurofibromatosis type 1
This study talks with people who have NF1 (and caregivers of children with NF1) about how visible tumors affect them. The goal is to create questionnaires that measure these concerns, which could lead to better support and treatments.
Bethesda, MarylandAges 5–120 - NCT06541847RecruitingPhase 2
Testing HLX-1502 for NF1 with Plexiform Neurofibromas
This trial tests an experimental drug called HLX-1502 for people with NF1 who have a plexiform neurofibroma (a type of nerve tumor) that is growing or causing problems. It aims to see if the drug is safe and can shrink or stop the tumor from worsening.
Birmingham, AlabamaAges 12 years+ - NCT06507748Recruiting
Measuring pain with a finger device in NF1
This study tests a new way to measure pain and other sensations in people with NF1 using a device that clips onto a finger or toe. The device looks at how your pupil reacts to mild pulses, which may help doctors better understand your pain.
Washington D.C., District of ColumbiaAges 1–120 - NCT06222203Recruiting
Watching for cancer in NF1-related nerve tumors
This study monitors people with neurofibromatosis type 1 (NF1) over time to watch for signs that their nerve tumors might turn into cancer. It helps researchers learn which tumors are more likely to change and may lead to better care.
Bethesda, MarylandAges 3–120 - NCT04395495Recruiting
RASopathy disorder study biobank for kids and families
This study collects and stores health samples and information from people with RASopathy conditions (like Noonan or Costello syndromes) and from family members who may not have the condition. It helps researchers understand these disorders and supports future studies that could lead to better care.
Cincinnati, OhioAges Any age - NCT04750928RecruitingPhase 1/Phase 2
Abemaciclib for NF1 tumors using pills and body scans
This trial studies whether the medicine abemaciclib can shrink or slow the growth of “atypical neurofibromas” in people with NF1. Participants take pills and undergo regular check-ups, including MRI scans to measure the tumor.
Bethesda, MarylandAges 12 years+ - NCT04763109Recruiting
MRI scan with AI to spot early changes in NF1 children
This study uses special MRI scans plus computer (AI) analysis to look for early, possibly cancer-related skin or tissue changes in children with neurofibromatosis type 1 (NF1). If it works, it could help doctors detect concerning changes earlier and plan care sooner.
Los Angeles, CaliforniaAges 5–17 - NCT03050268Recruiting
Study of childhood cancer risk in families
This study looks at inherited (family) risk for childhood cancers, including families with early cancers or known cancer risk conditions. It may help researchers understand why some children get cancer and improve future risk detection and care.
Memphis, TennesseeAges Any age - NCT02544022Recruiting
Testing and validating pain and symptom questionnaires for NF1
This study checks whether patient surveys (questionnaires) can reliably measure symptoms and pain in people with NF1 who have plexiform neurofibromas. It helps create better tools for tracking how you feel and how treatments may affect quality of life.
Washington D.C., District of ColumbiaAges 5 years+ - NCT00598351Recruiting
Study tracks changes in NF2 using repeated brain scans
This study follows people with neurofibromatosis type 2 (NF2) over time to learn how the condition changes, using repeat MRI scans. The information may help researchers understand disease patterns and improve future treatments.
Bethesda, MarylandAges 8–75 - NCT04463316Recruiting
Clinic study for people with rare genetic conditions
This study is for people who have a rare syndrome or rare congenital condition and are seen at a rare-disease clinic. It aims to better understand these conditions and how care works in a team setting, which may help guide future treatment decisions.
Rotterdam, South HollandAges 18 years+ - NCT05199376Recruiting
Cryotherapy treatment for painful, hard-to-remove NF1 tumors
This trial tests whether freezing treatment done through the skin (cryotherapy) can reduce pain and discomfort from certain non-cancer NF1 tumors that can’t be safely removed. You may be able to join if you’re an adult with NF1, a painful or bothersome benign lesion, and can safely undergo procedures like MRI.
LyonAges 18 years+ - NCT06523582Recruiting
Genetic study of neuroendocrine tumors in Mexican patients
This study aims to find genetic causes of neuroendocrine tumors in Mexican patients. By understanding your DNA, researchers hope to improve diagnosis and treatment for people with these rare conditions.
Mexico City, Mexico CityAges 18 years+ - NCT07407803RecruitingPhase 3
TQ-B3234 for adults with non-surgical neurofibromatosis type 1 tumors
This trial tests an oral capsule called TQ-B3234 for adults who have painful, inoperable nerve tumors from neurofibromatosis type 1. It aims to see if the drug can shrink these tumors or stop them from growing.
Hefei, AnhuiAges 18 years+ - NCT07102394RecruitingPhase 1
Testing talimogene laherparepvec for skin bumps in adults with NF1
This trial tests a drug called IMLYGIC (talimogene laherparepvec) to see if it is safe and tolerable for treating skin bumps (cutaneous neurofibromas) in adults with NF1. The drug is injected directly into the bumps, and the study will check if it can shrink them or improve symptoms.
Baltimore, MarylandAges 18 years+ - NCT06735820RecruitingPhase 1/Phase 2
MEK and MDM2 inhibitors for NF1-related tumors
This trial tests two targeted drugs (selumetinib and milademetan) for people with neurofibromatosis type 1 (NF1) who have either a malignant peripheral nerve sheath tumor (MPNST) or an atypical neurofibromatous neoplasm with uncertain biologic potential (ANNUBP). The goal is to see if blocking certain proteins can shrink or control these tumors.
Washington D.C., District of ColumbiaAges 18 years+
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Common questions
- Are there clinical trials for neurofibromatosis?
- Yes. Clin2 currently lists 37 recruiting neurofibromatosis studies from the U.S. registry, each rewritten for real people, not researchers, so you can see what it’s testing and who it’s for.
- How do I know if I qualify for a neurofibromatosis trial?
- Each study lists its eligibility criteria — rules about age, diagnosis, and prior treatments. On every Clin2 trial page we explain these in words written for real people and offer a short, optional pre-screen for a fit read. The study team makes the final decision.
- Does it cost anything to join a neurofibromatosis trial?
- Using Clin2 is always free. Many trials cover the cost of the study treatment and related visits; some reimburse travel. The study team explains exactly what’s covered before you decide.
Related conditions
Clin2 helps you find and understand clinical trials and does not provide medical advice. Study data comes from ClinicalTrials.gov. Talk with your doctor about whether a specific trial is right for you.