Overview
Acquired cystic disease-associated renal cell carcinoma (ACD-RCC) is a type of kidney cancer that develops in people who have acquired cystic kidney disease, which is a condition that occurs in patients with long-term kidney failure, especially those on dialysis for many years. Unlike inherited cystic kidney diseases, acquired cystic kidney disease develops over time as a result of chronic kidney disease and dialysis treatment. Over the years, fluid-filled sacs (cysts) form in the kidneys, and in some cases, cancer can develop within these cysts. ACD-RCC is considered a distinct subtype of kidney cancer recognized by the World Health Organization. It tends to occur more often in men than women and is most commonly found in patients who have been on dialysis for more than 10 years. Many cases are discovered incidentally during routine imaging or when a kidney is removed for transplant. The tumors often appear as multiple nodules and may occur in both kidneys. The good news is that ACD-RCC generally has a favorable prognosis compared to other types of kidney cancer. Most cases are found at an early stage and are low grade, meaning the cancer cells tend to grow slowly. Treatment usually involves surgical removal of the tumor or the affected kidney (nephrectomy). In patients who receive a kidney transplant, the diseased kidneys may be removed, which also addresses the cancer risk. Regular monitoring with imaging is important for patients on long-term dialysis to catch any tumors early.
Also known as:
Key symptoms:
Blood in the urineFlank or side painA mass or lump felt in the kidney areaUnexplained weight lossFatigue or tirednessLoss of appetiteFever without an obvious causeOften no symptoms at all (found incidentally on imaging)Worsening kidney functionAnemia or low blood counts
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
10 eventsCity of Hope Medical Center — PHASE2
Dana-Farber Cancer Institute — PHASE4
Zhejiang Haichang Biotech Co., Ltd. — PHASE2
City of Hope Medical Center — PHASE2
Abramson Cancer Center at Penn Medicine — NA
Sun Yat-sen University — NA
Gustave Roussy, Cancer Campus, Grand Paris — NA
Menoufia University — NA
Erasmus Medical Center — NA
Bristol-Myers Squibb — PHASE1
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Acquired cystic disease-associated renal cell carcinoma.
20 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 Acquired cystic disease-associated renal cell carcinoma.
Community
No community posts yet. Be the first to share your experience with Acquired cystic disease-associated renal cell carcinoma.
Start the conversation →Latest news about Acquired cystic disease-associated renal cell carcinoma
Disease timeline:
New recruiting trial: Testing the Role of DNA Released From Tumor Cells Into the Blood in Guiding the Use of Immunotherapy After Surgical Removal of the Bladder, Kidney, Ureter, and Urethra for Urothelial Cancer Treatment, MODERN Study
A new clinical trial is recruiting patients for Acquired cystic disease-associated renal cell carcinoma
New recruiting trial: A Study of LY4052031 in Participants With Advanced or Metastatic Urothelial Cancer or Other Solid Tumors
A new clinical trial is recruiting patients for Acquired cystic disease-associated renal cell carcinoma
New recruiting trial: Yttrium-90 (Y90) Radioembolization for the Treatment of Early Stage Renal Cell Carcinoma, The RENEGADE Trial
A new clinical trial is recruiting patients for Acquired cystic disease-associated renal cell carcinoma
New recruiting trial: Phase Ib/II Trial of Envafolimab Plus Lenvatinib for Subjects With Solid Tumors
A new clinical trial is recruiting patients for Acquired cystic disease-associated renal cell carcinoma
New recruiting trial: Single-layer Robot-assisted Transperitoneal Retroperitoneal Tubeless Radical Nephrectomy
A new clinical trial is recruiting patients for Acquired cystic disease-associated renal cell carcinoma
New recruiting trial: Kidney Cancer Observational Protocol
A new clinical trial is recruiting patients for Acquired cystic disease-associated renal cell carcinoma
New recruiting trial: Neoadjuvant of Axitinib Plus PD-1 to Improve Disease Free Survival of Patients With Renal Cell Carcinoma
A new clinical trial is recruiting patients for Acquired cystic disease-associated renal cell carcinoma
New recruiting trial: Comparison of In-Home Versus In-Clinic Administration of Subcutaneous Nivolumab Through Cancer CARE (Connected Access and Remote Expertise) Beyond Walls (CCBW) Program
A new clinical trial is recruiting patients for Acquired cystic disease-associated renal cell carcinoma
New recruiting trial: A Study of SPX-303, a Bispecific Antibody Targeting LILRB2 and PD-L1 in Patients With Solid Tumors
A new clinical trial is recruiting patients for Acquired cystic disease-associated renal cell carcinoma
New recruiting trial: A Phase 1 Study of AB521 Monotherapy and Combination Therapies in Renal Cell Carcinoma and Other Solid Tumors
A new clinical trial is recruiting patients for Acquired cystic disease-associated 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 kidney cancer, and has it spread beyond the kidney?,Is surgery the best option for me, or are there other treatment approaches to consider?,Should both of my kidneys be removed to prevent future cancers from developing?,Am I a candidate for a kidney transplant, and how does this cancer affect my eligibility?,How often should I have imaging done to monitor for cancer recurrence?,Are there any clinical trials available for my type of kidney cancer?,What changes should I make to my dialysis or medication routine after treatment?
Common questions about Acquired cystic disease-associated renal cell carcinoma
What is Acquired cystic disease-associated renal cell carcinoma?
Acquired cystic disease-associated renal cell carcinoma (ACD-RCC) is a type of kidney cancer that develops in people who have acquired cystic kidney disease, which is a condition that occurs in patients with long-term kidney failure, especially those on dialysis for many years. Unlike inherited cystic kidney diseases, acquired cystic kidney disease develops over time as a result of chronic kidney disease and dialysis treatment. Over the years, fluid-filled sacs (cysts) form in the kidneys, and in some cases, cancer can develop within these cysts. ACD-RCC is considered a distinct subtype of ki
How is Acquired cystic disease-associated renal cell carcinoma inherited?
Acquired cystic disease-associated renal cell carcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Acquired cystic disease-associated renal cell carcinoma typically begin?
Typical onset of Acquired cystic disease-associated renal cell carcinoma is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Acquired cystic disease-associated renal cell carcinoma?
Yes — 20 recruiting clinical trials are currently listed for Acquired cystic disease-associated 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 Acquired cystic disease-associated renal cell carcinoma?
25 specialists and care centers treating Acquired cystic disease-associated renal cell carcinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.