Actively Recruiting

Phase 2
Age: 180Days - 22Years
All Genders
ID05828069

Phase 2 Study of Tovorafenib (DAY101) for Progressive, Relapsed, or Refractory Langerhans Cell Histiocytosis in Children and Young Adults

Led by National Cancer Institute (NCI) · Updated on 2026-06-05

48

Participants Needed

117

Research Sites

N/A

Total Duration

On this page

AI-Summary

What this Trial Is About

Researchers are evaluating the safety, side effects, best dose, and activity of tovorafenib (DAY101) in treating children and young adults with progressive, relapsed, or refractory Langerhans cell histiocytosis (LCH), a disease where too many immature Langerhans cells build up and form tumors in organs like bones, skin, lungs, and pituitary gland. This phase II trial focuses on patients whose disease is growing, spreading, or returning after prior treatment. The study aims to understand how well tovorafenib works and its effects on patients with different genetic mutations related to LCH. Participants receive tovorafenib orally once a week on days 1, 8, 15, and 22 of each 28-day cycle, up to 12 cycles unless the disease worsens or side effects are unacceptable. Throughout the trial, patients undergo imaging scans such as MUGA or echocardiography and FDG-PET or CT to monitor disease status. Blood and urine samples are collected regularly. Those suspected of having bone marrow or central nervous system involvement will also have bone marrow biopsies, aspirations, and lumbar punctures during the study and follow-up. Patients are involved in regular assessments including scans, laboratory tests, and sample collections to monitor response and safety. Follow-up visits occur 28 days after treatment ends, then at 3, 6, 9, and 12 months, and finally 2 years after completing treatment. The main measures include overall response rate after 2 cycles, event-free survival, progression-free survival, duration of response, and overall survival, with safety monitored continuously throughout the trial.

CONDITIONS

Brief Title

A Study With Tovorafenib (DAY101) as a Treatment Option for Progressive, Relapsed, or Refractory Langerhans Cell Histiocytosis

Who Can Participate

Age: 180Days - 22Years
All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Age between 180 days and under 22 years at enrollment
  • Body surface area of at least 0.3 m^2
  • Diagnosis of progressive, relapsed, or recurrent Langerhans cell histiocytosis with measurable disease
  • Histologic verification of LCH from original diagnosis or relapse/progression
  • Pathogenic somatic mutation detected in specified genes related to LCH
  • Ability to take oral or enteral medication (oral suspension or tablet)
  • Karnofsky or Lansky performance status of 50% or higher
  • Eastern Cooperative Oncology Group (ECOG) performance status of 0, 1, or 2
  • No myelosuppressive chemotherapy or investigational anticancer therapy within 14 days prior to study
  • No radiation therapy within 2 weeks after last dose fraction
  • Fully recovered from prior surgery and acute toxic effects of prior therapies
  • Steroid use of 0.5 mg/kg/day prednisone equivalent or less averaged over the month prior
  • No use of strong CYP2C8 inducers or inhibitors 14 days before and during study
  • No use of certain narrow therapeutic index BCRP substrate medications 14 days before and during study
  • Adequate blood counts and organ function as specified
  • Fractional shortening of 25% or greater or ejection fraction of 50% or greater within 28 days prior
  • No dyspnea at rest or exercise intolerance unless due to pulmonary LCH
  • Controlled seizure disorder if present
  • HIV patients on effective antiviral therapy without interfering medications
  • Signed informed consent and compliance with all regulatory requirements
Not Eligible

You will not qualify if you...

  • LCH with other hematologic malignancies or history of non-histiocytic cancers
  • Skin-limited disease or GI tract involvement only by endoscopic biopsy
  • LCH-associated neurodegeneration without parenchymal or systemic lesions
  • Activating mutations in MAP2K1 gene
  • Refractory nausea, vomiting, malabsorption, or external biliary shunt
  • Uncontrolled infections
  • Major surgery or significant trauma within 14 days prior to enrollment
  • History of significant bowel resection or malabsorptive disease
  • Significant ophthalmologic conditions or risk factors for retinal vein occlusion or central serous retinopathy
  • History of organ or bone marrow transplant
  • Active cardiovascular disease or recent serious cardiac events
  • History of significant central nervous system hemorrhage
  • Allergy to tovorafenib or severe drug reaction history
  • Grade 3 symptomatic creatinine kinase elevation
  • Pregnant or breastfeeding females
  • Patients not agreeing to use effective contraception during and after study participation

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Your Study Journey

Screening

Duration - 2 to 4 weeks

Participants are screened for eligibility to participate in the trial.

Treatment

Duration - Up to 12 months (12 cycles of 28 days each)

Participants receive tovorafenib orally once weekly on days 1, 8, 15, and 22 of each 28-day cycle. This continues for up to 12 cycles unless there is disease progression or unacceptable side effects. Participants will also undergo heart scans (MUGA or ECHO), imaging scans (FDG-PET or CT), and provide blood and urine samples during this time. Those suspected of bone marrow or central nervous system involvement will have additional biopsies and lumbar punctures performed during the study.

Weekly visits for each dose during 28-day cycles, with imaging and sample collection visits throughout treatment

Follow-up

Duration - Up to 2 years post treatment

After completing treatment, participants are monitored with follow-up visits to assess their health and response to therapy. Additional biopsies and lumbar punctures may be performed if needed.

Visits at 28 days, then at months 3, 6, 9, 12, and 24 after treatment completion

Trial Site Locations

Total: 117 locations

1

Children's Hospital of Alabama

Birmingham, Alabama, United States, 35233

Actively Recruiting

2

Arkansas Children's Hospital

Little Rock, Arkansas, United States, 72202-3591

Actively Recruiting

3

Kaiser Permanente Downey Medical Center

Downey, California, United States, 90242

Actively Recruiting

4

Loma Linda University Medical Center

Loma Linda, California, United States, 92354

Actively Recruiting

5

Children's Hospital Los Angeles

Los Angeles, California, United States, 90027

Actively Recruiting

6

Valley Children's Hospital

Madera, California, United States, 93636

Active, Not Recruiting

7

UCSF Benioff Children's Hospital Oakland

Oakland, California, United States, 94609

Actively Recruiting

8

Kaiser Permanente-Oakland

Oakland, California, United States, 94611

Actively Recruiting

9

Children's Hospital of Orange County

Orange, California, United States, 92868

Actively Recruiting

10

Lucile Packard Children's Hospital Stanford University

Palo Alto, California, United States, 94304

Actively Recruiting

11

UCSF Medical Center-Mission Bay

San Francisco, California, United States, 94158

Actively Recruiting

12

Children's Hospital Colorado

Aurora, Colorado, United States, 80045

Actively Recruiting

13

Rocky Mountain Hospital for Children-Presbyterian Saint Luke's Medical Center

Denver, Colorado, United States, 80218

Actively Recruiting

14

Connecticut Children's Medical Center

Hartford, Connecticut, United States, 06106

Actively Recruiting

15

Yale University

New Haven, Connecticut, United States, 06520

Actively Recruiting

16

Alfred I duPont Hospital for Children

Wilmington, Delaware, United States, 19803

Actively Recruiting

17

Children's National Medical Center

Washington D.C., District of Columbia, United States, 20010

Actively Recruiting

18

Golisano Children's Hospital of Southwest Florida

Fort Myers, Florida, United States, 33908

Actively Recruiting

19

UF Health Cancer Institute - Gainesville

Gainesville, Florida, United States, 32610

Actively Recruiting

20

Memorial Regional Hospital/Joe DiMaggio Children's Hospital

Hollywood, Florida, United States, 33021

Actively Recruiting

21

Nemours Children's Clinic-Jacksonville

Jacksonville, Florida, United States, 32207

Actively Recruiting

22

University of Miami Miller School of Medicine-Sylvester Cancer Center

Miami, Florida, United States, 33136

Actively Recruiting

23

Nicklaus Children's Hospital

Miami, Florida, United States, 33155

Suspended

24

Arnold Palmer Hospital for Children

Orlando, Florida, United States, 32806

Actively Recruiting

25

Nemours Children's Hospital

Orlando, Florida, United States, 32827

Actively Recruiting

26

Nemours Children's Clinic - Pensacola

Pensacola, Florida, United States, 32504

Actively Recruiting

27

Johns Hopkins All Children's Hospital

St. Petersburg, Florida, United States, 33701

Actively Recruiting

28

Saint Joseph's Hospital/Children's Hospital-Tampa

Tampa, Florida, United States, 33607

Actively Recruiting

29

Children's Healthcare of Atlanta - Arthur M Blank Hospital

Atlanta, Georgia, United States, 30329

Actively Recruiting

30

Memorial Health University Medical Center

Savannah, Georgia, United States, 31404

Actively Recruiting

31

Kapiolani Medical Center for Women and Children

Honolulu, Hawaii, United States, 96826

Actively Recruiting

32

Lurie Children's Hospital-Chicago

Chicago, Illinois, United States, 60611

Actively Recruiting

33

University of Chicago Comprehensive Cancer Center

Chicago, Illinois, United States, 60637

Actively Recruiting

34

OSF Children's Hospital of Illinois

Peoria, Illinois, United States, 61637

Actively Recruiting

35

Riley Hospital for Children

Indianapolis, Indiana, United States, 46202

Actively Recruiting

36

Blank Children's Hospital

Des Moines, Iowa, United States, 50309

Actively Recruiting

37

University of Iowa/Holden Comprehensive Cancer Center

Iowa City, Iowa, United States, 52242

Actively Recruiting

38

University of Kentucky/Markey Cancer Center

Lexington, Kentucky, United States, 40536

Actively Recruiting

39

Children's Hospital New Orleans

New Orleans, Louisiana, United States, 70118

Actively Recruiting

40

Ochsner Medical Center Jefferson

New Orleans, Louisiana, United States, 70121

Actively Recruiting

41

Sinai Hospital of Baltimore

Baltimore, Maryland, United States, 21215

Actively Recruiting

42

Michigan State University

East Lansing, Michigan, United States, 48823

Suspended

43

Corewell Health Grand Rapids Hospitals - Helen DeVos Children's Hospital

Grand Rapids, Michigan, United States, 49503

Actively Recruiting

44

Bronson Methodist Hospital

Kalamazoo, Michigan, United States, 49007

Actively Recruiting

45

Children's Hospitals and Clinics of Minnesota - Minneapolis

Minneapolis, Minnesota, United States, 55404

Actively Recruiting

46

University of Minnesota/Masonic Cancer Center

Minneapolis, Minnesota, United States, 55455

Active, Not Recruiting

47

University of Mississippi Medical Center

Jackson, Mississippi, United States, 39216

Actively Recruiting

48

Cardinal Glennon Children's Medical Center

St Louis, Missouri, United States, 63104

Actively Recruiting

49

Washington University School of Medicine

St Louis, Missouri, United States, 63110

Actively Recruiting

50

Mercy Hospital Saint Louis

St Louis, Missouri, United States, 63141

Actively Recruiting

51

Children's Hospital and Medical Center of Omaha

Omaha, Nebraska, United States, 68114

Actively Recruiting

52

University of Nebraska Medical Center

Omaha, Nebraska, United States, 68198

Actively Recruiting

53

Alliance for Childhood Diseases/Cure 4 the Kids Foundation

Las Vegas, Nevada, United States, 89135

Actively Recruiting

54

Summerlin Hospital Medical Center

Las Vegas, Nevada, United States, 89144

Actively Recruiting

55

Hackensack University Medical Center

Hackensack, New Jersey, United States, 07601

Actively Recruiting

56

Rutgers Cancer Institute of New Jersey-Robert Wood Johnson University Hospital

New Brunswick, New Jersey, United States, 08903

Actively Recruiting

57

Saint Joseph's Regional Medical Center

Paterson, New Jersey, United States, 07503

Actively Recruiting

58

Albany Medical Center

Albany, New York, United States, 12208

Actively Recruiting

59

Maimonides Medical Center

Brooklyn, New York, United States, 11219

Suspended

60

The Steven and Alexandra Cohen Children's Medical Center of New York

New Hyde Park, New York, United States, 11040

Actively Recruiting

61

Laura and Isaac Perlmutter Cancer Center at NYU Langone

New York, New York, United States, 10016

Actively Recruiting

62

Mount Sinai Hospital

New York, New York, United States, 10029

Actively Recruiting

63

NYP/Columbia University Medical Center/Herbert Irving Comprehensive Cancer Center

New York, New York, United States, 10032

Actively Recruiting

64

Memorial Sloan Kettering Cancer Center

New York, New York, United States, 10065

Actively Recruiting

65

NYP/Weill Cornell Medical Center

New York, New York, United States, 10065

Actively Recruiting

66

State University of New York Upstate Medical University

Syracuse, New York, United States, 13210

Actively Recruiting

67

Montefiore Medical Center - Moses Campus

The Bronx, New York, United States, 10467

Actively Recruiting

68

New York Medical College

Valhalla, New York, United States, 10595

Actively Recruiting

69

Mission Hospital

Asheville, North Carolina, United States, 28801

Actively Recruiting

70

Duke University Medical Center

Durham, North Carolina, United States, 27710

Actively Recruiting

71

East Carolina University

Greenville, North Carolina, United States, 27834

Actively Recruiting

72

Wake Forest University Health Sciences

Winston-Salem, North Carolina, United States, 27157

Actively Recruiting

73

Rainbow Babies and Childrens Hospital

Cleveland, Ohio, United States, 44106

Actively Recruiting

74

Nationwide Children's Hospital

Columbus, Ohio, United States, 43205

Actively Recruiting

75

Dayton Children's Hospital

Dayton, Ohio, United States, 45404

Actively Recruiting

76

University of Oklahoma Health Sciences Center

Oklahoma City, Oklahoma, United States, 73104

Actively Recruiting

77

Oregon Health and Science University

Portland, Oregon, United States, 97239

Actively Recruiting

78

Geisinger Medical Center

Danville, Pennsylvania, United States, 17822

Actively Recruiting

79

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States, 19104

Actively Recruiting

80

Saint Christopher's Hospital for Children

Philadelphia, Pennsylvania, United States, 19134

Actively Recruiting

81

Children's Hospital of Pittsburgh of UPMC

Pittsburgh, Pennsylvania, United States, 15224

Actively Recruiting

82

Prisma Health Richland Hospital

Columbia, South Carolina, United States, 29203

Actively Recruiting

83

BI-LO Charities Children's Cancer Center

Greenville, South Carolina, United States, 29605

Actively Recruiting

84

Sanford USD Medical Center - Sioux Falls

Sioux Falls, South Dakota, United States, 57117-5134

Actively Recruiting

85

East Tennessee Childrens Hospital

Knoxville, Tennessee, United States, 37916

Actively Recruiting

86

The Children's Hospital at TriStar Centennial

Nashville, Tennessee, United States, 37203

Suspended

87

Vanderbilt University/Ingram Cancer Center

Nashville, Tennessee, United States, 37232

Actively Recruiting

88

Dell Children's Medical Center of Central Texas

Austin, Texas, United States, 78723

Actively Recruiting

89

UT Southwestern/Simmons Cancer Center-Dallas

Dallas, Texas, United States, 75390

Actively Recruiting

90

El Paso Children's Hospital

El Paso, Texas, United States, 79905

Actively Recruiting

91

Baylor College of Medicine/Dan L Duncan Comprehensive Cancer Center

Houston, Texas, United States, 77030

Actively Recruiting

92

M D Anderson Cancer Center

Houston, Texas, United States, 77030

Actively Recruiting

93

Children's Hospital of San Antonio

San Antonio, Texas, United States, 78207

Actively Recruiting

94

Methodist Children's Hospital of South Texas

San Antonio, Texas, United States, 78229

Actively Recruiting

95

University of Texas Health Science Center at San Antonio

San Antonio, Texas, United States, 78229

Actively Recruiting

96

Scott and White Memorial Hospital

Temple, Texas, United States, 76508

Actively Recruiting

97

Primary Children's Hospital

Salt Lake City, Utah, United States, 84113

Actively Recruiting

98

University of Virginia Cancer Center

Charlottesville, Virginia, United States, 22908

Actively Recruiting

99

Children's Hospital of The King's Daughters

Norfolk, Virginia, United States, 23507

Actively Recruiting

100

VCU Massey Comprehensive Cancer Center

Richmond, Virginia, United States, 23298

Actively Recruiting

101

Seattle Children's Hospital

Seattle, Washington, United States, 98105

Actively Recruiting

102

Providence Sacred Heart Medical Center and Children's Hospital

Spokane, Washington, United States, 99204

Actively Recruiting

103

West Virginia University Charleston Division

Charleston, West Virginia, United States, 25304

Actively Recruiting

104

Children's Hospital of Wisconsin

Milwaukee, Wisconsin, United States, 53226

Actively Recruiting

105

Sydney Children's Hospital

Randwick, New South Wales, Australia, 2031

Actively Recruiting

106

Queensland Children's Hospital

South Brisbane, Queensland, Australia, 4101

Actively Recruiting

107

Royal Children's Hospital

Parkville, Victoria, Australia, 3052

Actively Recruiting

108

Perth Children's Hospital

Perth, Western Australia, Australia, 6009

Actively Recruiting

109

University of Alberta Hospital

Edmonton, Alberta, Canada, T6G 2B7

Actively Recruiting

110

British Columbia Children's Hospital

Vancouver, British Columbia, Canada, V6H 3V4

Actively Recruiting

111

IWK Health Centre

Halifax, Nova Scotia, Canada, B3K 6R8

Actively Recruiting

112

McMaster Children's Hospital at Hamilton Health Sciences

Hamilton, Ontario, Canada, L8N 3Z5

Actively Recruiting

113

Children's Hospital

London, Ontario, Canada, N6A 5W9

Actively Recruiting

114

Hospital for Sick Children

Toronto, Ontario, Canada, M5G 1X8

Actively Recruiting

115

Centre Hospitalier Universitaire Sainte-Justine

Montreal, Quebec, Canada, H3T 1C5

Actively Recruiting

116

Centre Hospitalier Universitaire de Sherbrooke-Fleurimont

Sherbrooke, Quebec, Canada, J1H 5N4

Actively Recruiting

117

CHU de Quebec-Centre Hospitalier de l'Universite Laval (CHUL)

Québec, Canada, G1V 4G2

Actively Recruiting

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How is the study designed?

Study Type

INTERVENTIONAL

Masking

NONE

Allocation

NA

Model

SEQUENTIAL

Primary Purpose

TREATMENT

Number of Arms

1

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