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Langerhans Cell HistiocytosisPhase 2NCT06582745

Targeted Approach to Langerhans Cell Histiocytosis (LCH) Using MEK Inhibitor, Trametinib

A Phase 2 study testing Trametinib in people with Langerhans Cell Histiocytosis, run by Cook Children's Health Care System at 1 site in United States.

Recruiting

Looking for participants now. Contact the study team or a site below to ask about taking part.

Sites and contacts
Official record
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Trial summary

The purpose of this Phase II clinical trial is to establish the safety and effectiveness of trametinib, a targeted therapy, for the treatment of newly or recently diagnosed Langerhans Cell Histiocytosis (LCH) among pediatric patients. Read more about this study

Who is it for?
Ages 1 year to 30 years
Conditions the study is for
Langerhans Cell Histiocytosis
What is being tested?
Trametinib
Type of treatment
Pill or oral medicine
Could I receive a placebo?
No, everyone receives an active treatment
How many people
75 participants
Where
1 siteUnited States
Study dates
24 Jun 2024to Dec 2039
Phase
Phase 2
Are there results?
Not yet: the study is under way

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 1 year to 30 years
  • All sexes
  • No healthy volunteers
  • Child, Adult

Who may be able to join

  • Diagnosis/disease status:
  • Patients with newly diagnosed Langerhans cell histiocytosis (LCH) OR
  • Patients with relapsed or refractory disease OR
  • Patients with newly diagnosed or relapsed/refractory disease who are receiving the liquid formula of trametinib OR
  • Patients who have been receiving trametinib as a treatment for LCH since January 1, 2020 may be included in the observational chart review to track long-term follow-up. Eligibility for chart review cohort will include receiving trametinib as treatment.
  • Diagnosis confirmed with biopsy prior to start of treatment
Show all 21Show fewer
  • Patient must have adequate cardiac function evident through Echocardiogram (ECHO) and Electrocardiogram (EKG) within 30 days of starting treatment.
  • Shortening fraction of ≥ 27% by echocardiogram or
  • Ejection fraction of ≥ 50% by gated radionuclide study
  • QTC < 480 msec
  • Performance status: Patients must have a performance status corresponding to ECOG scores of 0, 1, or 2. Use Karnofsky ≥ 50% for patients > 16 years of age and Lansky ≥50% for patients ≤16 years of age.
  • Adequate organ and marrow function as defined below:
  • Absolute Neutrophil count ≥ 1,500/μL
  • Platelets ≥ 100x103/μL
  • Total bilirubin ≤ 1.5X ULN for age
  • AST/ALT ≤ 2.5 X ULN for age
  • Serum creatinine based on age/gender
  • Hemoglobin ≥ 8 g/dL
  • Patients with bone marrow disease must have hemoglobin ≥ 8 g/dL with transfusion support allowed
  • Women of childbearing potential and men must agree to use adequate contraception (hormonal or barrier method of birth control; abstinence) prior to study entry, for the duration of study participation, and for 4 months after the last dose. Should a woman become pregnant or suspect she is pregnant while participating in this study, she should inform her treating physician immediately.
  • Ability to understand study procedures and to comply with them for the entire length of the study.

Who cannot join

  • Patients diagnosed with Low-Risk True Skin Only or a Single Bone lesion that does not require treatment and will only be observed will not be eligible, with the exception of CNS-risk lesions/special site disease or functionally critical lesions:
  • CNS-risk/special site includes: Sphenoid, Mastoid, Orbital, zygomatic, ethmoid, maxillary, or temporal bones, the cranial fossa, pituitary gland or neurodegenerative disease, odontoid peg, vertebral lesion with intraspinal soft tissue extension
  • Functionally critical: A single lesion not described above which may cause "functionally critical anatomic abnormality" wherein attempts at local therapy would cause unacceptable morbidity. This can be at the discretion of the Principal Investigator.
  • Patients whose genetic testing reveals a class 3 MAP2K1 mutation:
  • I103_K104del
  • E102_I103del
Show all 14Show fewer
  • L98_K104delinsQ
  • L98_I103del
  • I99_K104del
  • Patients who present with jaundice at diagnosis.
  • Patients who are pregnant or breastfeeding are not eligible. Women of childbearing potential must receive a negative pregnancy test within 14 days of starting treatment or the patient will not be eligible.
  • Patients who are allergic to trametinib
  • Current drug or alcohol use or dependence that, in the opinion of the site investigator, would interfere with adherence to study requirements.
  • Inability or unwillingness of patient or parent/legally authorized representative to give written informed consent.

Trial locations and contacts

1 site in 1 country. Contact the study team or a site near you to ask about taking part.

United States1 site, 1 recruiting
  • Cook Children's Health Care System

    Fort Worth, Texas, 76104

    Megan Gibbs, BSN, RN, 682-885-2116, Megan.Gibbs@cookchildrens.org

    Anish Ray, MD

    Recruiting

Other trials in United States

About this study

The purpose of this Phase II clinical trial is to establish the safety and effectiveness of trametinib, a targeted therapy, for the treatment of newly or recently diagnosed Langerhans Cell Histiocytosis (LCH) among pediatric patients.

Read the detailed description

Langerhans cell histiocytosis (LCH) is a rare histiocytic disease derived from the mononuclear phagocytic system, affecting between 2 and 10 cases per one million children under 15 years. Controversy exists as to whether it is a true malignancy or a cancer-like disease, given that the BRAFV600E mutation frequently found in LCH has been found in several cancers as well as in benign nevi. Regardless, among histiocytic disorders, LCH is well-known to result from clonal proliferation of immature cells that can affect a single organ (single system LCH) which may be unifocal or multifocal; or LCH may involve multiple organs which may be limited or widespread. Notably, involvement of specific organs such as the liver, spleen, and bone marrow is typically considered high risk. A biopsy is a critical element for diagnosis as histiocytes with surface expression of CD207 (langerin) and CD1a are a defining characteristic of LCH. In addition to a biopsy of either skin lesion, lymph node, or tumor, standard imaging such as CT, MRI, and PET will be used to assess the extent of disease.

This trial is designed to evaluate treatment of newly diagnosed or relapsed LCH patients with targeted therapy (trametinib). The investigators hypothesize that this will help establish a new treatment for these patients who have historically been treated with cytotoxic chemotherapy that can potentially be associated with serious adverse effects as well as relapse which have typically been noted within two years, therefore justifying the rationale to treat for minimum of two years. This clinical trial will provide an opportunity to assess for adverse events and toxicities associated with trametinib for the treatment of LCH among pediatric patients. Additionally, the investigators will critically analyze the effectiveness of genomic cancer testing through the use of liquid, tumor, and tumor-match next-generation sequencing (NGS) in patients with an LCH diagnosis.

Being tested
Trametinib
Keywords
LCH, MEK inhibitor, Targeted therapy
Medical subject headings
Histiocytosis, Langerhans-Cell

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • TrametinibDrug

    Also called Mekinist

    Participants will be given trametinib as a single agent once a day dosing, with a maximum dose of 2kg. Participants who are able to swallow pills will be given oral tablets. Participants unable to swallow pills will be dispensed the liquid formula concentrate at 0.05mg/mL with dosing of 0.015mg/kg.

Study groups in NCT06582745
Study groupRoleWhat they receive
Prospective TreatmentExperimentalTrametinib will be administered in 28-day cycles, given once daily or adjusted as per clinical judgment of the treating physician, with a maximum dosage of 2mg daily. Patients will be followed for 4 years after receiving treatment for two years. Patients may continue on the same treatment beyond two years if they and their treating physicians agree to do so in the best interest of the patient.
Receives: Drug: Trametinib
Observation OnlyNo interventionPatients who have been receiving trametinib as a treatment for LCH since January 1, 2020 may be included in an observational chart review to track long-term follow-up.

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Time to Progression (TTP)

    TTP defined for each participant as the period of time from start of treatment to the manifestation of objective progression, but excluding occurrences of death.

    Measured: Up to six years

  2. Progression-free Survival (PFS)

    PFS defined for each participant as the time from start of treatment to disease progression (recurrence) or death by any cause in the absence of progression.

    Measured: Up to six years

  3. Overall Survival (OS)

    OS defined for each participant as the time from the date of first administration until the date of death from any cause. Participants not having an event at the time of analysis will be censored at the date they were last known to be alive.

    Measured: Up to six years

Secondary outcomes (2)
  1. Response Rate

    The response rate will be defined as the percentage of patients with Complete Response (the disappearance of all signs of LCH in response to treatment), Stable Disease (neither increasing nor decreasing in extent or severity), Partial Response (at least a 30% decrease in the signs of LCH), and Progressive Disease (at least a 20 percent growth in the signs of LCH since the beginning of treatment).

    Measured: Up to six years

  2. Blood HistioTrak Levels in Participants with BRAF V600E Mutations

    The HistioTrak test is a highly sensitive droplet digital PCR (ddPCR)-based molecular assay designed to measure MRD in patients with BRAF V600E-driven histiocytic and other neoplasms.

    Measured: Up to six years

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted3 Sep 2024
  2. Study start24 Jun 2024
  3. Primary completionJun 2039 (estimated)
  4. Study completionDec 2039 (estimated)

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Interventional
Phase
Phase 2
Primary purpose
Treatment
Allocation
Non-randomised
Intervention model
Parallel groups
Masking
None (open label)
Enrolment
75 participants (estimated)
IDs, dates and publications
ClinicalTrials.gov ID
NCT06582745
Sponsor's protocol ID
2023-058
Status last verified
Apr 2026
First submitted
30 Aug 2024
Last updated
7 Apr 2026
Results posted
No
Data monitoring committee
No
FDA-regulated drug
Yes
FDA-regulated device
No

Publications

  • Stalemark H, Laurencikas E, Karis J, Gavhed D, Fadeel B, Henter JI. Incidence of Langerhans cell histiocytosis in children: a population-based study. Pediatr Blood Cancer. 2008 Jul;51(1):76-81. doi: 10.1002/pbc.21504.

    PubMed 18266220
  • Badalian-Very G, Vergilio JA, Fleming M, Rollins BJ. Pathogenesis of Langerhans cell histiocytosis. Annu Rev Pathol. 2013 Jan 24;8:1-20. doi: 10.1146/annurev-pathol-020712-163959. Epub 2012 Aug 6.

    PubMed 22906202
  • Allen CE, Ladisch S, McClain KL. How I treat Langerhans cell histiocytosis. Blood. 2015 Jul 2;126(1):26-35. doi: 10.1182/blood-2014-12-569301. Epub 2015 Mar 31.

    PubMed 25827831
  • Jouenne F, Chevret S, Bugnet E, Clappier E, Lorillon G, Meignin V, Sadoux A, Cohen S, Haziot A, How-Kit A, Kannengiesser C, Lebbe C, Gossot D, Mourah S, Tazi A. Genetic landscape of adult Langerhans cell histiocytosis with lung involvement. Eur Respir J. 2020 Feb 27;55(2):1901190. doi: 10.1183/13993003.01190-2019. Print 2020 Feb.

    PubMed 31806714
  • Chakraborty R, Hampton OA, Shen X, Simko SJ, Shih A, Abhyankar H, Lim KP, Covington KR, Trevino L, Dewal N, Muzny DM, Doddapaneni H, Hu J, Wang L, Lupo PJ, Hicks MJ, Bonilla DL, Dwyer KC, Berres ML, Poulikakos PI, Merad M, McClain KL, Wheeler DA, Allen CE, Parsons DW. Mutually exclusive recurrent somatic mutations in MAP2K1 and BRAF support a central role for ERK activation in LCH pathogenesis. Blood. 2014 Nov 6;124(19):3007-15. doi: 10.1182/blood-2014-05-577825. Epub 2014 Sep 8.

    PubMed 25202140
  • Vicenzi P, Ray A. Comment on: Langerhans cell histiocytosis with BRAF p.N486_P490del or MAP2K1 p.K57_G61del treated by the MEK inhibitor trametinib. Pediatr Blood Cancer. 2021 Apr;68(4):e28776. doi: 10.1002/pbc.28776. Epub 2020 Oct 21. No abstract available.

    PubMed 33089615
  • Gadner H, Minkov M, Grois N, Potschger U, Thiem E, Arico M, Astigarraga I, Braier J, Donadieu J, Henter JI, Janka-Schaub G, McClain KL, Weitzman S, Windebank K, Ladisch S; Histiocyte Society. Therapy prolongation improves outcome in multisystem Langerhans cell histiocytosis. Blood. 2013 Jun 20;121(25):5006-14. doi: 10.1182/blood-2012-09-455774. Epub 2013 Apr 15.

    PubMed 23589673
  • Morimoto A, Ikushima S, Kinugawa N, Ishii E, Kohdera U, Sako M, Fujimoto J, Bessho F, Horibe K, Tsunematsu Y, Imashuku S; Japan Langerhans Cell Histiocytosis Study Group. Improved outcome in the treatment of pediatric multifocal Langerhans cell histiocytosis: Results from the Japan Langerhans Cell Histiocytosis Study Group-96 protocol study. Cancer. 2006 Aug 1;107(3):613-9. doi: 10.1002/cncr.21985.

    PubMed 16804933
  • Sieni E, Barba C, Mortilla M, Savelli S, Grisotto L, Di Giacomo G, Romano K, Fonda C, Biggeri A, Guerrini R, Arico M. Early Diagnosis and Monitoring of Neurodegenerative Langerhans Cell Histiocytosis. PLoS One. 2015 Jul 15;10(7):e0131635. doi: 10.1371/journal.pone.0131635. eCollection 2015.

    PubMed 26176859
  • Chohan G, Barnett Y, Gibson J, Reddel SW, Barnett MH. Langerhans cell histiocytosis with refractory central nervous system involvement responsive to infliximab. J Neurol Neurosurg Psychiatry. 2012 May;83(5):573-5. doi: 10.1136/jnnp-2011-300575. Epub 2011 Aug 19. No abstract available.

    PubMed 21856693
  • Titgemeyer C, Grois N, Minkov M, Flucher-Wolfram B, Gatterer-Menz I, Gadner H. Pattern and course of single-system disease in Langerhans cell histiocytosis data from the DAL-HX 83- and 90-study. Med Pediatr Oncol. 2001 Aug;37(2):108-14. doi: 10.1002/mpo.1178.

    PubMed 11496348
  • Diamond EL, Durham BH, Ulaner GA, Drill E, Buthorn J, Ki M, Bitner L, Cho H, Young RJ, Francis JH, Rampal R, Lacouture M, Brody LA, Ozkaya N, Dogan A, Rosen N, Iasonos A, Abdel-Wahab O, Hyman DM. Efficacy of MEK inhibition in patients with histiocytic neoplasms. Nature. 2019 Mar;567(7749):521-524. doi: 10.1038/s41586-019-1012-y. Epub 2019 Mar 13.

    PubMed 30867592
  • Haroche J, Cohen-Aubart F, Emile JF, Maksud P, Drier A, Toledano D, Barete S, Charlotte F, Cluzel P, Donadieu J, Benameur N, Grenier PA, Besnard S, Ory JP, Lifermann F, Idbaih A, Granel B, Graffin B, Hervier B, Arnaud L, Amoura Z. Reproducible and sustained efficacy of targeted therapy with vemurafenib in patients with BRAF(V600E)-mutated Erdheim-Chester disease. J Clin Oncol. 2015 Feb 10;33(5):411-8. doi: 10.1200/JCO.2014.57.1950. Epub 2014 Nov 24.

    PubMed 25422482
  • Flaherty KT, Robert C, Hersey P, Nathan P, Garbe C, Milhem M, Demidov LV, Hassel JC, Rutkowski P, Mohr P, Dummer R, Trefzer U, Larkin JM, Utikal J, Dreno B, Nyakas M, Middleton MR, Becker JC, Casey M, Sherman LJ, Wu FS, Ouellet D, Martin AM, Patel K, Schadendorf D; METRIC Study Group. Improved survival with MEK inhibition in BRAF-mutated melanoma. N Engl J Med. 2012 Jul 12;367(2):107-14. doi: 10.1056/NEJMoa1203421. Epub 2012 Jun 4.

    PubMed 22663011
  • Selt F, van Tilburg CM, Bison B, Sievers P, Harting I, Ecker J, Pajtler KW, Sahm F, Bahr A, Simon M, Jones DTW, Well L, Mautner VF, Capper D, Hernaiz Driever P, Gnekow A, Pfister SM, Witt O, Milde T. Response to trametinib treatment in progressive pediatric low-grade glioma patients. J Neurooncol. 2020 Sep;149(3):499-510. doi: 10.1007/s11060-020-03640-3. Epub 2020 Oct 7.

    PubMed 33026636

Questions about this trial

What is this clinical trial studying?

A Phase 2 study testing Trametinib in people with Langerhans Cell Histiocytosis, run by Cook Children's Health Care System at 1 site in United States.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 21 inclusion and 14 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: looking for participants now, as of the sponsor's last update on 7 Apr 2026. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

What does this phase mean?

Phase 2 studies give the treatment to a larger group to see whether it has the intended effect and to keep checking safety.

Not every study follows the same path, and some studies (observational studies, device studies) have no phase.

Are results available for this study?

This study is still under way. Results are not available in the source record yet.

How can a doctor refer a patient or contact the research team?

Contact Megan Gibbs, BSN, RN ((682) 885-2116, megan.gibbs@cookchildrens.org), or a site near the patient. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Time to Progression (TTP) (time frame: Up to six years). The study lists 3 primary outcomes in all. It is what the study was designed to measure, not a finding.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT06582745, which also lists 19 linked publications.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 7 Apr 2026.

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