Chromophobe renal cell carcinoma

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6Active trials32Specialists8Treatment centers

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

Chromophobe renal cell carcinoma (ChRCC) is a rare type of kidney cancer that starts in the cells lining the small tubes inside the kidney. It accounts for about 5% of all kidney cancers, making it one of the less common subtypes. The name 'chromophobe' comes from how the cancer cells look under a microscope — they do not absorb certain stains as strongly as other kidney cancer cells do. Many people with chromophobe renal cell carcinoma have no symptoms in the early stages. As the tumor grows, symptoms may include blood in the urine, pain in the side or lower back, a lump or mass in the kidney area, unexplained weight loss, or fatigue. The cancer is often found by accident during imaging tests done for other reasons. Compared to the more common clear cell type of kidney cancer, chromophobe renal cell carcinoma generally has a better outlook. It tends to grow more slowly and is less likely to spread to other parts of the body. Surgery to remove part or all of the affected kidney is the main treatment and is often curative when the cancer is caught early. For cases that have spread, treatment options include targeted therapies and immunotherapy, though these are less well studied specifically for the chromophobe subtype. Most cases occur sporadically, but a small number are linked to genetic conditions such as Birt-Hogg-Dubé syndrome.

Also known as:

Key symptoms:

Blood in the urine (may appear pink, red, or brown)Pain or aching in the side or lower backA lump or mass felt in the abdomen or sideUnexplained weight lossFatigue or feeling very tiredLoss of appetiteFever that comes and goes without infectionNight sweatsSwelling in the legs or anklesHigh blood pressure

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

7 events
Jul 2026Tumor-Derived Extracellular Vesicles for Noninvasive Molecular Classification of Kidney Cancer

Mayo Clinic

TrialNOT YET RECRUITING
Aug 2024Memory-like Natural Killer (NK) Cell Therapy in Patients With Renal Cell Carcinoma or Urothelial Carcinoma

Dana-Farber Cancer Institute — EARLY_PHASE1

TrialRECRUITING
Jul 2020Testing the Addition of a New Anti-cancer Drug, Radium-223 Dichloride, to the Usual Treatment (Cabozantinib) for Advanced Renal Cell Cancer That Has Spread to the Bone, RadiCaL Study

National Cancer Institute (NCI) — PHASE2

TrialACTIVE NOT RECRUITING
Sep 2019An Investigation of Kidney and Urothelial Tumor Metabolism in Patients Undergoing Surgical Resection and/or Biopsy

University of Texas Southwestern Medical Center — NA

TrialRECRUITING
Aug 2018A Study of Nivolumab In Combination With Cabozantinib in Patients With Non-Clear Cell Renal Cell Carcinoma

Memorial Sloan Kettering Cancer Center — PHASE2

TrialACTIVE NOT RECRUITING
Jun 2018Identification of Novel High Quality Methylated DNA Markers in Renal Tumors: Whole Methylome Discovery, Tissue Validation, and Feasibility Testing In Blood and Urine, The INQUIRE Study

Mayo Clinic

TrialACTIVE NOT RECRUITING
May 2018Cabozantinib or Sunitinib Malate in Treating Participants With Metastatic Variant Histology Renal Cell Carcinoma

M.D. Anderson Cancer Center — PHASE2

TrialACTIVE NOT RECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Chromophobe renal cell carcinoma.

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

View clinical trials →

Clinical Trials

6 recruitingView all trials with filters →
Phase 23 trials
A Study of Nivolumab In Combination With Cabozantinib in Patients With Non-Clear Cell Renal Cell Carcinoma
Phase 2
Active
PI: Darren Feldman, MD (Memorial Sloan Kettering Cancer Center) · Sites: Basking Ridge, New Jersey; Middletown, New Jersey +5 more · Age: 1899 yrs
Cabozantinib or Sunitinib Malate in Treating Participants With Metastatic Variant Histology Renal Cell Carcinoma
Phase 2
Active
PI: Matthew T Campbell (M.D. Anderson Cancer Center) · Sites: Houston, Texas; Houston, Texas +1 more · Age: 1899 yrs
Testing the Addition of a New Anti-cancer Drug, Radium-223 Dichloride, to the Usual Treatment (Cabozantinib) for Advanced Renal Cell Cancer That Has Spread to the Bone, RadiCaL Study
Phase 2
Active
PI: Rana R McKay (Alliance for Clinical Trials in Oncology) · Sites: Birmingham, Alabama; La Jolla, California +45 more · Age: 1899 yrs
N/A1 trial
An Investigation of Kidney and Urothelial Tumor Metabolism in Patients Undergoing Surgical Resection and/or Biopsy
N/A
Actively Recruiting
PI: Vitaly Margulis, MD (University of Texas Southwestern Medical Center) · Sites: Dallas, Texas · Age: 1899 yrs
Other1 trial
Identification of Novel High Quality Methylated DNA Markers in Renal Tumors: Whole Methylome Discovery, Tissue Validation, and Feasibility Testing In Blood and Urine, The INQUIRE Study
Active
PI: John B. Kisiel, MD (Mayo Clinic in Rochester) · Sites: Rochester, Minnesota · Age: 1899 yrs

Specialists

Showing 25 of 32View all specialists →
SS
Samer Salem
CLEVELAND, OH
Specialist
3 Chromophobe renal cell carcinoma publications
CP
Carmen Priolo
Specialist
4 Chromophobe renal cell carcinoma publications
DK
Damir Khabibullin
Specialist
4 Chromophobe renal cell carcinoma publications
RA
Reza Alaghehbandan
NEW WESTMINSTER, BRITISH COLUMBIA
Specialist
3 Chromophobe renal cell carcinoma publications
WB
Wafaa Bzeih
Specialist
3 Chromophobe renal cell carcinoma publications
TH
Tiegang Han
Specialist
3 Chromophobe renal cell carcinoma publications
LC
Liang Cheng
PROVIDENCE, RI
Specialist
2 Chromophobe renal cell carcinoma publications
MH
Michelle S Hirsch
Specialist
2 Chromophobe renal cell carcinoma publications
AH
Arndt Hartmann
Specialist
2 Chromophobe renal cell carcinoma publications
NM
Nadine Mahmoud
SAINT LOUIS, MO
Specialist
2 Chromophobe renal cell carcinoma publications
JC
Joelle Chami
Specialist
2 Chromophobe renal cell carcinoma publications
OH
Ondrej Hes
Specialist
2 Chromophobe renal cell carcinoma publications
HM
Hadi Mansour
DETROIT, MI
Specialist
2 Chromophobe renal cell carcinoma publications
EH
Elizabeth P Henske
BOSTON, MA
Specialist
5 Chromophobe renal cell carcinoma publications
MA
Michel Alchoueiry
Specialist
4 Chromophobe renal cell carcinoma publications
NM
Nizar M. Tannir, MD
HOUSTON, TX
Specialist
PI on 3 active trials
AA
Andrea B Apolo
Birmingham, Alabama
Specialist

Rare Disease Specialist

PI on 4 active trials
WM
Wenxin Xu, MD
BOSTON, MA
Specialist
PI on 2 active trials1 Chromophobe renal cell carcinoma publication
DM
Darren Feldman, MD
NEW YORK, NY
Specialist
PI on 8 active trials
MC
Matthew T Campbell
Specialist
PI on 2 active trials107 Chromophobe renal cell carcinoma publications
BM
Bradley McGregor, MD
BOSTON, MA
Specialist
PI on 2 active trials
CD
Camila MV Moniz, Doctor
SAN ANTONIO, TX
Specialist
PI on 1 active trial
RM
Rana R McKay
SAN DIEGO, CA
Specialist
PI on 1 active trial14 Chromophobe renal cell carcinoma 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 Chromophobe renal cell carcinoma.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Chromophobe renal cell carcinoma

1 articles
Clinical trialCLINICALTRIALSMar 26, 2026
Trial Now Recruiting: Testing the Effectiveness of Two Immunotherapy Drugs (Nivolumab and Ipilimumab) With One Anti-cancer Targeted Drug (Cabozantinib) for Rare Genitourinary Tumors (NCT03866382)
Researchers are testing whether combining three cancer drugs—nivolumab, ipilimumab, and cabozantinib—can help treat rare cancers of the bladder, kidney, prostat
See all news about Chromophobe renal cell carcinoma

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.

Questions for your doctor

Bring these to your next appointment

  • Q1.What stage is my chromophobe renal cell carcinoma, and has it spread beyond the kidney?,Is surgery an option for me, and would you recommend partial or full kidney removal?,Should I be tested for Birt-Hogg-Dubé syndrome or other hereditary conditions?,What is my expected prognosis based on the specific features of my tumor?,Are there clinical trials available specifically for chromophobe renal cell carcinoma?,How often will I need follow-up imaging and blood tests after treatment?,Should my family members be screened for kidney cancer or genetic conditions?

Common questions about Chromophobe renal cell carcinoma

What is Chromophobe renal cell carcinoma?

Chromophobe renal cell carcinoma (ChRCC) is a rare type of kidney cancer that starts in the cells lining the small tubes inside the kidney. It accounts for about 5% of all kidney cancers, making it one of the less common subtypes. The name 'chromophobe' comes from how the cancer cells look under a microscope — they do not absorb certain stains as strongly as other kidney cancer cells do. Many people with chromophobe renal cell carcinoma have no symptoms in the early stages. As the tumor grows, symptoms may include blood in the urine, pain in the side or lower back, a lump or mass in the kidne

How is Chromophobe renal cell carcinoma inherited?

Chromophobe renal cell carcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Chromophobe renal cell carcinoma typically begin?

Typical onset of Chromophobe renal cell carcinoma is adult. Age of onset can vary across affected individuals.

Are there clinical trials for Chromophobe renal cell carcinoma?

Yes — 6 recruiting clinical trials are currently listed for Chromophobe renal cell carcinoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Chromophobe renal cell carcinoma?

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