Carcinoid syndrome

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Who is this for?
Show terms as
2FDA treatments4Active trials47Specialists8Treatment centers1Financial resources

Where are you in your journey?

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

Also known as:

Clinical phenotype terms— hover any for plain English:

BronchoconstrictionHP:4000007Increased serum serotoninHP:0003144Facial telangiectasiaHP:0007380Pulmonary carcinoid tumorHP:0030445Abnormal circulating B-type natriuretic peptide concentrationHP:0031138RhinorrheaHP:0031417Hepatic necrosisHP:0002605ParagangliomaHP:0002668
Orphanet ↗NORD ↗

FDA & Trial Timeline

6 events
Jun 2026CardioNETPOL National Registry of Carcinoid Heart Disease

National Institute of Cardiology, Warsaw, Poland

TrialNOT YET RECRUITING
Nov 2025Carcinoid Syndrome Efficacy Study Featuring an Oral Daily Paltusotine Regimen

Crinetics Pharmaceuticals Inc. — PHASE3

TrialRECRUITING
Nov 2022Fibrosis in Chronic and Delayed Myocardial Infarction

University of Edinburgh

TrialRECRUITING
Apr 2022Investigation of a Transcatheter Tricuspid Valved Stent Graft in Patients With Carcinoid Heart Disease

Queen Mary University of London — NA

TrialACTIVE NOT RECRUITING
Jul 2019Lenvatinib and Everolimus in Treating Patients With Advanced, Unresectable Carcinoid Tumors

M.D. Anderson Cancer Center — PHASE2

TrialACTIVE NOT RECRUITING
Sep 2015An Investigational Scan (Dual Energy CT) in Detecting Gastrointestinal Carcinoid Tumors

M.D. Anderson Cancer Center — EARLY_PHASE1

TrialACTIVE NOT RECRUITING

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

Treatments

2 available

Xermelo

telotristat etiprate· TerSera Therapeutics, LLC

indicated for the treatment of carcinoid syndrome diarrhea in combination with somatostatin analog (SSA) therapy in adults inadequately controlled by SSA therapy

Somatuline Depot

Lanreotide· IPSEN, Inc.

the treatment of adults with carcinoid syndrome; when used, it reduces the frequency of short-acting somatostatin analog rescue therapy

Clinical Trials

4 recruitingView all trials with filters →
Phase 31 trial
Carcinoid Syndrome Efficacy Study Featuring an Oral Daily Paltusotine Regimen
Phase 3
Actively Recruiting
· Sites: Gilbert, Arizona; Newport Beach, California +41 more · Age: 1899 yrs
N/A1 trial
Investigation of a Transcatheter Tricuspid Valved Stent Graft in Patients With Carcinoid Heart Disease
N/A
Active
PI: Andreas Baumbach (Queen Mary University of London) · Sites: London, England · Age: 1899 yrs
Other1 trial
Fibrosis in Chronic and Delayed Myocardial Infarction
Actively Recruiting
PI: Marc Dweck, MBBS PhD (University of Edinburgh) · Sites: Edinburgh, Scotland · Age: 4090 yrs

Specialists

Showing 25 of 47View all specialists →
PM
Pablo Lapuerta, MD
SKILLMAN, NJ
Specialist
PI on 2 active trials
PM
Pablo LaPuerta, MD
SKILLMAN, NJ
Specialist
PI on 1 active trial
DM
Doug Fleming, MD
LAKE VILLAGE, AR
Specialist
PI on 1 active trial
AB
Andreas Baumbach
Specialist
PI on 1 active trial3 Carcinoid syndrome publications
JB
Janine North, BS
Specialist
PI on 1 active trial
AF
Antongiulio Faggiano
Specialist
4 Carcinoid syndrome publications
RD
Rebecca Dobson
AUBURN UNIVERSITY, AL
Specialist
1 Carcinoid syndrome publication
AC
Alexandra Chrisoulidou
Specialist
2 Carcinoid syndrome publications
FP
Francesco Panzuto
Specialist
3 Carcinoid syndrome publications
JH
Johannes Hofland
Specialist
3 Carcinoid syndrome publications
JD
Joseph Davar
Specialist
1 Carcinoid syndrome publication
SG
Simona Grozinsky-Glasberg
Specialist
1 Carcinoid syndrome publication
TW
Thomas Walter
Specialist
2 Carcinoid syndrome publications
NF
Nicola Fazio
Specialist
2 Carcinoid syndrome publications
FS
Francesca Spada
Specialist
2 Carcinoid syndrome publications
AL
Alice Laffi
Specialist
2 Carcinoid syndrome publications
SM
Sara Massironi
Specialist
2 Carcinoid syndrome publications
MR
Maria Rinzivillo
Specialist
2 Carcinoid syndrome publications
WH
Wouter W de Herder
Specialist
2 Carcinoid syndrome publications
MM
Merijn C F Mulders
Specialist
2 Carcinoid syndrome publications
MP
Marianne Pavel, Professor
Specialist
PI on 1 active trial1 Carcinoid syndrome publication
TH
Timothy Hobday
ROCHESTER, MN
Specialist
PI on 2 active trials1 Carcinoid syndrome publication

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

Financial Resources

1 resources
Xermelo(telotristat etiprate)TerSera Therapeutics, LLC

Travel Grants

No travel grants are currently matched to Carcinoid syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Carcinoid syndrome

Disease timeline:

New recruiting trial: Carcinoid Syndrome Efficacy Study Featuring an Oral Daily Paltusotine Regimen

A new clinical trial is recruiting patients for Carcinoid syndrome

New recruiting trial: Fibrosis in Chronic and Delayed Myocardial Infarction

A new clinical trial is recruiting patients for Carcinoid syndrome

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 Carcinoid syndrome

Are there clinical trials for Carcinoid syndrome?

Yes — 4 recruiting clinical trials are currently listed for Carcinoid syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Carcinoid syndrome?

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

What treatment and support options exist for Carcinoid syndrome?

1 patient support program are currently tracked on UniteRare for Carcinoid syndrome. See the treatments and support programs sections for copay assistance, eligibility, and contact details.