Mastocytosis

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ORPHA:98292OMIM:154800
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7Active trials26Specialists8Treatment centers

Where are you in your journey?

ℹ
UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

8 events
Jan 2025Analysis of the Role of IgE Proteoforms in Health and Disease

KU Leuven

TrialRECRUITING
Nov 2024Avapritinib Rollover Study

Blueprint Medicines Corporation — PHASE4

TrialRECRUITING
Jun 2024Mastocytosis Registry (of Zurich)

University of Zurich

TrialRECRUITING
Jun 2024Study of Cellular Heterogeneity in Patients With Mastocytosis

University Hospital, Toulouse — NA

TrialNOT YET RECRUITING
Mar 2024Quality of Life and Disease-related Symptoms in Individuals With Systemic Mastocytosis

Uppsala University

TrialACTIVE NOT RECRUITING
Mar 2024Avapritinib With Decitabine in Patients With SM-AHN

H. Lee Moffitt Cancer Center and Research Institute — PHASE1

TrialRECRUITING
Sep 2019Relationship Between Circulating Sclerostin and Bone Lesions in Patients With Mastocytosis

Medical University of Lublin

TrialRECRUITING
Sep 2002Study of Factors Regulating Mast Cell Proliferation

National Institute of Allergy and Infectious Diseases (NIAID)

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Mastocytosis.

7 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

7 recruitingView all trials with filters →
Phase 41 trial
Avapritinib Rollover Study
Phase 4
Actively Recruiting
· Sites: Edegem; Toronto, Ontario +5 more
View on ClinicalTrials.gov ↗I'm interested →
Phase 11 trial
Avapritinib With Decitabine in Patients With SM-AHN
Phase 1
Actively Recruiting
PI: Andrew Kuykendall, MD (Moffitt Cancer Center) · Sites: Phoenix, Arizona; Palo Alto, California +5 more · Age: 18–99 yrs
View on ClinicalTrials.gov ↗I'm interested →
Other5 trials
Mastocytosis Registry (of Zurich)
Actively Recruiting
· Sites: Zurich
View on ClinicalTrials.gov ↗I'm interested →
Quality of Life and Disease-related Symptoms in Individuals With Systemic Mastocytosis
Active
PI: Mariann Hedström, PhD (Uppsala University, Department of Public Health an) · Sites: Stockholm; Uppsala · Age: 18–99 yrs
View on ClinicalTrials.gov ↗I'm interested →
Relationship Between Circulating Sclerostin and Bone Lesions in Patients With Mastocytosis
Actively Recruiting
PI: Aneta A Szudy-Szczyrek, MD., PhD. (Medical University of Lublin) · Sites: Lublin, Lublin Voivodeship · Age: 18–99 yrs
View on ClinicalTrials.gov ↗I'm interested →
Study of Factors Regulating Mast Cell Proliferation
Actively Recruiting
PI: Hirsh D Komarow, M.D. (National Institute of Allergy and Infectious Disea) · Sites: Bethesda, Maryland · Age: 0–80 yrs
View on ClinicalTrials.gov ↗I'm interested →
Analysis of the Role of IgE Proteoforms in Health and Disease
Actively Recruiting
PI: Rik Schrijvers, MD, PhD (UZ/KU Leuven) · Sites: Leuven, Vlaams-Brabant · Age: 18–99 yrs
View on ClinicalTrials.gov ↗I'm interested →

Specialists

Showing 25 of 26View all specialists →
MP
Mariann Hedström, PhD
Specialist
PI on 1 active trial
AP
Aneta A Szudy-Szczyrek, MD., PhD.
Specialist
PI on 1 active trial
MM
Marcus Maurer, MD
PUEBLO, CO
Specialist
PI on 5 active trials
FM
Frank Siebenhaar, MD
Specialist
PI on 2 active trials
JM
Joseph H Butterfield, MD
ROCHESTER, MN
Specialist
PI on 1 active trial
OP
Olivier Lortholary, MD, PhD
Specialist
PI on 5 active trials
MB
Marie Bleakley
SEATTLE, WA
Specialist
PI on 4 active trials
RN
Ryotaro Nakamura
Duarte, California
Specialist

Rare Disease Specialist

PI on 6 active trials
HM
Hirsh D Komarow, M.D.
BETHESDA, MD
Specialist
PI on 3 active trials
EM
Elizabeth Fox, MD
Specialist
PI on 5 active trials
NR
Nancy Wells, DNSc, RN
Specialist
PI on 2 active trials
DM
David Miklos
CHICAGO, IL
Specialist
PI on 2 active trials
JG
Jason Gotlib
PALO ALTO, CA
Specialist
PI on 2 active trials6 Mastocytosis publications
SM
Soledad Kleppe, MD
Specialist
PI on 1 active trial
MP
Marcelo Serra, PhD
Buenos Aires, Buenos Aires
Specialist

Rare Disease Specialist

PI on 1 active trial
MP
Maria Lourdes Posadas Martinez, PhD
Specialist
PI on 1 active trial
RP
Rik Schrijvers, MD, PhD
Specialist
PI on 2 active trials
AP
Alon Y Hershko, MD, PhD
Specialist
PI on 2 active trials
MM
Melody C Carter, M.D.
Specialist
PI on 3 active trials
CM
Cristina Bulai Livideanu, MD
Specialist
PI on 3 active trials
AP
Anthony L Boral, MD, PhD
CAMBRIDGE, MA
Specialist
PI on 1 active trial
TM
Tom R. Fitch, M.D.
GLENDALE, AZ
Specialist
PI on 1 active trial
MM
Michael Heinrich, MD
Specialist
PI on 1 active trial
PM
Paul Armistead, MD
CHAPEL HILL, NC
Specialist
PI on 1 active trial
MT
Massimo Triggiani
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center ↗

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center ↗

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program ↗

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site ↗

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site ↗

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site ↗

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine ↗

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program ↗

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Mastocytosis.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Mastocytosis

Disease timeline:

New recruiting trial: Avapritinib With Decitabine in Patients With SM-AHN

A new clinical trial is recruiting patients for Mastocytosis

New recruiting trial: Relationship Between Circulating Sclerostin and Bone Lesions in Patients With Mastocytosis

A new clinical trial is recruiting patients for Mastocytosis

New recruiting trial: Epidemiological Data on Mast Cell Pathologies in France

A new clinical trial is recruiting patients for Mastocytosis

New recruiting trial: Study of Factors Regulating Mast Cell Proliferation

A new clinical trial is recruiting patients for Mastocytosis

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Mastocytosis

Are there clinical trials for Mastocytosis?

Yes — 7 recruiting clinical trials are currently listed for Mastocytosis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Mastocytosis?

25 specialists and care centers treating Mastocytosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.