Diffuse cutaneous mastocytosis

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ORPHA:79456Q82.2
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29Specialists8Treatment centers

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

Also known as:

DCMDiffuse cutaneous maculopapulous mastocytosis

Clinical phenotype terms— hover any for plain English:

Abnormality of the spleenHP:0001743Myeloproliferative disorderHP:0005547Abnormal bone marrow cell morphologyHP:0005561Darier's signHP:0025081FlushingHP:0031284Elevated total serum tryptaseHP:0031901Peau d'orangeHP:0025533Increased total lymphocyte countHP:0100827Anaphylactic shockHP:0100845
Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Jul 2026Stimulation-based Therapy to Improve Balance in DCM

Medical College of Wisconsin — PHASE1, PHASE2

TrialNOT YET RECRUITING
Mar 2026Dilated Cardiomyopathy - Unknown Therapeutic Risk Reduction by Contempary Medication and Implantable Cardioverter-Defibrillators (DUTCH-ICD)

University Medical Center Groningen — NA

TrialNOT YET RECRUITING
Jan 2026Endocardial Delivery for Myocardial Regeneration Using Allogeneic iPSC-derived Cardiomyocyte Spheroids for HF With Systolic Dysfunction (EMERALD Study)

Heartseed Inc. — PHASE1, PHASE2

TrialNOT YET RECRUITING
Oct 2025ALXN2350 in Adult Participants With BAG3-Associated Dilated Cardiomyopathy

Alexion Pharmaceuticals, Inc. — PHASE1, PHASE2

TrialRECRUITING
Oct 2025Evaluation of Gait Impairment and Correlation in Patients With DCM

Pusan National University Yangsan Hospital

TrialNOT YET RECRUITING
Jul 2025Combined Effect of Aerobic and Resistance Exercise in Non Ischemic Dilated Cardiomyopathy Patients

Riphah International University — NA

TrialNOT YET RECRUITING
Apr 2025Performance of the Cardiac Microcurrent (C-MIC) System With a Less Invasively Placed Left Ventricular Lead

Berlin Heals GmbH — NA

TrialRECRUITING
Mar 2025High Fat Diet for Cardiac Metabolic Reprogramming

Azienda Ospedaliero-Universitaria Careggi — NA

TrialNOT YET RECRUITING
Jan 2025Rehab in Mild Stable DCM: Feasibility RCT Comparing Structured Rehabilitation to Clinical Surveillance

Royal College of Surgeons, Ireland — NA

TrialNOT YET RECRUITING
Dec 2024Assessment of the Predictive Value of Anti-beta1AR and Anti-L-CaC Antibodies in the Evolution to Dilated Cardiomyopathy in Patients With Acute Viral Myocarditis

Union Hospital, Tongji Medical College, Huazhong University of Science and Technology

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Diffuse cutaneous mastocytosis.

View clinical trials →

Clinical Trials

View all trials with filters →

No actively recruiting trials found for Diffuse cutaneous mastocytosis at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Diffuse cutaneous mastocytosis community →

Specialists

Showing 25 of 29View all specialists →
BS
Brenda Sandmaier
SEATTLE, WA
Specialist
PI on 17 active trials
DM
David Maloney
Specialist
PI on 11 active trials
KM
Kyoo H. Lee, MD
Specialist
PI on 8 active trials
MF
Maryam Fouladi
COLUMBUS, OH
Specialist
PI on 7 active trials2 Diffuse cutaneous mastocytosis publications
DC
Dolores Grosso, DNP, CRNP
Specialist
PI on 4 active trials
RN
Ryotaro Nakamura
Duarte, California
Specialist

Rare Disease Specialist

PI on 6 active trials
NM
Neal Flomenberg, MD
PHILADELPHIA, PA
Specialist
PI on 5 active trials
NR
Nancy Wells, DNSc, RN
Specialist
PI on 2 active trials
WM
William Mahle, MD
MARIETTA, GA
Specialist
PI on 5 active trials1 Diffuse cutaneous mastocytosis publication
JM
Jeffrey J. Raizer, MD
CHICAGO, IL
Specialist
PI on 7 active trials
JD
John Deeken
FAIRFAX, VA
Specialist
PI on 1 active trial
AW
Ann Woolfrey
SEATTLE, WA
Specialist
PI on 5 active trials
AP
Anthony L Boral, MD, PhD
CAMBRIDGE, MA
Specialist
PI on 1 active trial
SP
Suzanne C. Danhauer, PhD
WINSTON SALEM, NC
Specialist
PI on 5 active trials
JP
Javier Bermejo Thomas, MD, PhD
Specialist
PI on 2 active trials
TM
Tom R. Fitch, M.D.
GLENDALE, AZ
Specialist
PI on 1 active trial
NM
Neal J. Meropol, MD
BROOKLYN, NY
Specialist
PI on 1 active trial
MM
Mary Ann Knovich, MD
CHARLOTTE, NC
Specialist
PI on 1 active trial
EM
Elizabeth C. Dees, MD
CHAPEL HILL, NC
Specialist
PI on 1 active trial
HM
Hyman Muss, MD
CHAPEL HILL, NC
Specialist
PI on 2 active trials
AM
Adam J. Esbenshade, MD
NASHVILLE, TN
Specialist
PI on 2 active trials
AP
Anthony F. Shields, MD, PhD
Specialist
PI on 1 active trial
RM
Ray Hershberger, MD
COLUMBUS, OH
Specialist
PI on 2 active trials
RP
Robert Z. Orlowski, MD, PhD
HOUSTON, TX
Specialist
PI on 1 active trial
JW
James Ware
Specialist
PI on 3 active trials35 Diffuse cutaneous mastocytosis publications

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 Diffuse cutaneous mastocytosis.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Diffuse cutaneous mastocytosisForum →

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Latest news about Diffuse cutaneous mastocytosis

Disease timeline:

New recruiting trial: Cardiac Magnetic Resonance for Risk Stratification in Dilated Cardiomyopathy

A new clinical trial is recruiting patients for Diffuse cutaneous mastocytosis

New recruiting trial: Bromocriptine in Dilated Cardiomyopathy Among Women of Reproductive Age

A new clinical trial is recruiting patients for Diffuse cutaneous mastocytosis

New recruiting trial: AI-Enabled Direct-from-ECG Ejection Fraction (EF) Severity Assessment Using COR ECG Wearable Monitor

A new clinical trial is recruiting patients for Diffuse cutaneous mastocytosis

New recruiting trial: Treatment of Non-ischemic Cardiomyopathies by Intravenous Extracellular Vesicles of Cardiovascular Progenitor Cells

A new clinical trial is recruiting patients for Diffuse cutaneous mastocytosis

New recruiting trial: Dilated Cardiomyopathy-Cardiac Magnetic Resonance (DCM-CMR) Ancillary Study

A new clinical trial is recruiting patients for Diffuse cutaneous mastocytosis

New recruiting trial: Outcome-targeted Therapy: Principle and Outcome Evaluation: Clinical Study and Phenotype-genotype Correlation

A new clinical trial is recruiting patients for Diffuse cutaneous mastocytosis

New recruiting trial: Dilated Cardiomyopathy Detection Using AI and Screening With Mobile Technology (DCM-DETECT)

A new clinical trial is recruiting patients for Diffuse cutaneous mastocytosis

New recruiting trial: A Phase 1 Open-Label Study of the Safety of Intravenous Allogeneic Neonatal Mesenchymal Cells (nMSCs) in Young Adult (1A) and Pediatric (1B) Patients With Dilated Cardiomyopathy (DCM)

A new clinical trial is recruiting patients for Diffuse cutaneous mastocytosis

New recruiting trial: Administration of Allogeneic-MSC in Patients With Non-Ischemic Dilated Cardiomyopathy

A new clinical trial is recruiting patients for Diffuse cutaneous mastocytosis

New recruiting trial: Study of Personalized Allocation of Defibrillators in Non-ischemic Heart Failure (SPANISH-1)

A new clinical trial is recruiting patients for Diffuse cutaneous 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 Diffuse cutaneous mastocytosis

Which specialists treat Diffuse cutaneous mastocytosis?

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