Overview
Clear cell papillary renal cell carcinoma (also called clear cell papillary RCC or CCPRCC) is a rare type of kidney cancer. It is considered a distinct subtype of renal cell carcinoma, meaning it has unique features that set it apart from other kidney cancers. This tumor is made up of cells that look clear under the microscope and grow in a papillary (finger-like) pattern. It is generally considered a low-grade, slow-growing cancer with an excellent prognosis. This type of kidney tumor is most often found by accident during imaging tests done for other reasons. Many patients have no symptoms at all. When symptoms do occur, they may include blood in the urine, flank pain, or a mass that can be felt in the abdomen, though these are uncommon. Clear cell papillary RCC was first recognized in patients with end-stage kidney disease, but it is now known to also occur in people with otherwise healthy kidneys. The main treatment is surgery, which is usually curative. Because this cancer tends to behave in a non-aggressive way, partial removal of the kidney (partial nephrectomy) is often preferred to preserve kidney function. In most reported cases, the cancer has not spread beyond the kidney at the time of diagnosis, and recurrence after surgery is very rare. No chemotherapy or radiation is typically needed. Long-term follow-up with imaging is recommended to monitor for any recurrence.
Also known as:
Key symptoms:
Blood in the urinePain in the side or flank areaA lump or mass felt in the abdomenNo symptoms at all (often found by accident on imaging)FatigueUnexplained weight loss
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
4 eventsNational Cancer Institute (NCI) — PHASE1, PHASE2
Oncorena AB — PHASE1, PHASE2
Xencor, Inc. — PHASE1
City of Hope Medical Center — PHASE1
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Clear cell papillary renal cell carcinoma.
4 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Clear cell papillary renal cell carcinoma.
Community
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Start the conversation →Latest news about Clear cell papillary renal cell carcinoma
Disease timeline:
New recruiting trial: Palbociclib and Sasanlimab for the Treatment of Advanced Clear Cell Renal Cell Carcinoma (ccRCC) or Papillary Renal Cell Carcinoma (pRCC)
A new clinical trial is recruiting patients for Clear cell papillary renal cell carcinoma
New recruiting trial: Study of Orellanine in Metastatic Clear-Cell or Papillary Renal Cell Carcinoma
A new clinical trial is recruiting patients for Clear cell papillary renal cell carcinoma
New recruiting trial: Study of XmAb®819 in Subjects With Advanced Clear Cell Renal Cell Carcinoma
A new clinical trial is recruiting patients for Clear cell papillary 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.Is my tumor confirmed to be clear cell papillary RCC, and how certain is the pathology diagnosis?,Can I have a partial nephrectomy to preserve my kidney, or do I need the whole kidney removed?,What is the chance that this cancer will come back or spread after surgery?,How often will I need follow-up imaging scans, and for how long?,Do I need any additional treatment after surgery, such as medication or radiation?,Should I have genetic testing to check if this could be related to a hereditary condition?,Are there any lifestyle changes I should make to protect my remaining kidney function?
Common questions about Clear cell papillary renal cell carcinoma
What is Clear cell papillary renal cell carcinoma?
Clear cell papillary renal cell carcinoma (also called clear cell papillary RCC or CCPRCC) is a rare type of kidney cancer. It is considered a distinct subtype of renal cell carcinoma, meaning it has unique features that set it apart from other kidney cancers. This tumor is made up of cells that look clear under the microscope and grow in a papillary (finger-like) pattern. It is generally considered a low-grade, slow-growing cancer with an excellent prognosis. This type of kidney tumor is most often found by accident during imaging tests done for other reasons. Many patients have no symptoms
How is Clear cell papillary renal cell carcinoma inherited?
Clear cell papillary renal cell carcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Clear cell papillary renal cell carcinoma typically begin?
Typical onset of Clear cell papillary renal cell carcinoma is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Clear cell papillary renal cell carcinoma?
Yes — 4 recruiting clinical trials are currently listed for Clear cell papillary 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 Clear cell papillary renal cell carcinoma?
22 specialists and care centers treating Clear cell papillary renal cell carcinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.