Genetic cystic renal disease

Last reviewed March 21, 2026

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ORPHA:93587

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23Specialists 8Treatment centers

Where are you in your journey?

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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:

Hereditary cystic renal disease

Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event

Nov 2025Rutgers University Study of the Genetics of Kidney Disease

Rutgers, The State University of New Jersey

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Genetic cystic renal disease.

View clinical trials →

Clinical Trials

View all trials with filters →

No actively recruiting trials found for Genetic cystic renal disease at this time.

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

Search ClinicalTrials.gov ↗Join the Genetic cystic renal disease community →

Specialists

23 foundView all specialists →

MM

Michel B Chonchol, MD

AURORA, CO

Specialist

Autosomal dominant polycystic kidney disease Renal ciliopathy

PI on 2 active trials

Active trials Directions Travel grants

TP

Thomas Weimbs, PhD

Specialist

Autosomal dominant polycystic kidney disease Renal ciliopathy

PI on 1 active trial

Active trials Directions Travel grants

AM

Arlene Chapman, MD

KIMPER, KY

Specialist

Autosomal dominant polycystic kidney disease Renal ciliopathy

PI on 2 active trials1 Genetic cystic renal disease publication

Active trials Directions Travel grants

MM

Meyeon Park, MD

SAN FRANCISCO, CA

Specialist

Autosomal dominant polycystic kidney disease Renal ciliopathy

PI on 1 active trial

Active trials Directions Travel grants

TP

Tevfik Ecder, Professor

Specialist

Autosomal dominant polycystic kidney disease Genetic glomerular disease Glomerular disease+1 more

PI on 1 active trial

Active trials Directions Travel grants

MM

Marva Moxey-Mims, M.D.

WASHINGTON, DC

Specialist

Autosomal dominant polycystic kidney disease Paroxysmal dystonia Paroxysmal kinesigenic dyskinesia+1 more

PI on 3 active trials

Active trials Directions Travel grants

KM

Kris Ann P Schultz, MD

Specialist

Central nervous system cystic malformation Congenital hypothalamic hamartoma syndrome Embryonal rhabdomyosarcoma+22 more

PI on 3 active trials

Active trials Directions Travel grants

GM

Giuseppe Remuzzi, M.D.

Specialist

Autosomal dominant multiple pterygium syndrome Autosomal dominant polycystic kidney disease Ciliopathy+6 more

PI on 3 active trials

Active trials Directions Travel grants

GM

Giuseppe Remuzzi, MD

Specialist

Atypical hemolytic uremic syndrome Autosomal dominant multiple pterygium syndrome Autosomal dominant polycystic kidney disease+7 more

PI on 7 active trials

Active trials Directions Travel grants

TP

Tara Matise, Ph.D.

Specialist

Pulmonary arterial hypertension associated with congenital heart disease Pulmonary arterial hypertension associated with connective tissue disease Pulmonary arterial hypertension associated with schistosomiasis

PI on 2 active trials

Active trials Directions Travel grants

RM

Richard Fatica, MD

CLEVELAND, OH

Specialist

Autosomal dominant polycystic kidney disease Renal ciliopathy

PI on 1 active trial

Active trials Directions Travel grants

KP

Kyongtae Bae, MD, PhD

Specialist

Autosomal dominant multiple pterygium syndrome Autosomal dominant polycystic kidney disease Ciliopathy+2 more

PI on 1 active trial

Active trials Directions Travel grants

FP

Frank Czerwiec, M.D., Ph.D.

ROCKVILLE, MD

Specialist

Autosomal dominant multiple pterygium syndrome Autosomal dominant polycystic kidney disease Ciliopathy+2 more

PI on 2 active trials

Active trials Directions Travel grants

MM

Manish Sinha, PhD, MRCP (UK), MRCPCH

SPOKANE, WA

Specialist

Autosomal dominant multiple pterygium syndrome Autosomal dominant polycystic kidney disease Ciliopathy+3 more

PI on 1 active trial

Active trials Directions Travel grants

RP

Rian Dişçi, Professor

Specialist

Autosomal dominant polycystic kidney disease Genetic glomerular disease Glomerular disease+1 more

PI on 1 active trial2 Genetic cystic renal disease publications

Active trials Directions Travel grants

MP

Maria V. Irazabal, M.D., Ph.D

Specialist

Autosomal dominant polycystic kidney disease Ciliopathy Renal ciliopathy

PI on 1 active trial

Active trials Directions Travel grants

MP

Maria V Irazabal, M.D., Ph.D.

Specialist

Autosomal dominant multiple pterygium syndrome Autosomal dominant polycystic kidney disease Ciliopathy+1 more

PI on 2 active trials

Active trials Directions Travel grants

RM

Rekha Garg, MD

Specialist

Autosomal dominant multiple pterygium syndrome Autosomal dominant polycystic kidney disease Ciliopathy+3 more

PI on 2 active trials

Active trials Directions Travel grants

FF

Fatih Tufan, Fellow

Specialist

Autosomal dominant polycystic kidney disease Genetic glomerular disease Glomerular disease+1 more

PI on 1 active trial

Active trials Directions Travel grants

NP

Neşe Çolak, Professor

Specialist

Autosomal dominant polycystic kidney disease Genetic glomerular disease Glomerular disease+1 more

PI on 1 active trial

Active trials Directions Travel grants

KP

K. Ty BAE, MD, PhD

Specialist

Autosomal dominant polycystic kidney disease Renal ciliopathy

PI on 1 active trial

Active trials Directions Travel grants

KM

Kristen Nowak, Ph.D., MPH

Specialist

Autosomal dominant multiple pterygium syndrome Autosomal dominant polycystic kidney disease Ciliopathy+3 more

PI on 1 active trial

Active trials Directions Travel grants

AB

Angel Barnes, BSN

Specialist

Genetic urogenital tumor Intestinal malformation Neonatal autoimmune hemolytic anemia+2 more

PI on 1 active trial

Active trials Directions Travel grants

Treatment Centers

8 centers

Baylor College of Medicine Rare Disease Center ↗

Baylor College of Medicine

📍 Houston, TX

Stanford Medicine Rare Disease Center ↗

Stanford Medicine

📍 Stanford, CA

NIH Clinical Center Undiagnosed Diseases Program ↗

National Institutes of Health

📍 Bethesda, MD

UCLA UDN Clinical Site ↗

UCLA Health

📍 Los Angeles, CA

Baylor College of Medicine UDN Clinical Site ↗

Baylor College of Medicine

📍 Houston, TX

Harvard/MGH UDN Clinical Site ↗

Massachusetts General Hospital

📍 Boston, MA

Mayo Clinic Center for Individualized Medicine ↗

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

UCLA Rare Disease Day Program ↗

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Genetic cystic renal disease.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Genetic cystic renal diseaseForum →

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Latest news about Genetic cystic renal disease

Disease timeline:

New recruiting trial: Cystic Fibrosis in the Kidney: Monitoring the Effectiveness of Elexacaftor/tezacaftor/ivacaftor in Urine After a Short Pause of Therapy

A new clinical trial is recruiting patients for Genetic cystic renal disease

New recruiting trial: Rutgers University Study of the Genetics of Kidney Disease

A new clinical trial is recruiting patients for Genetic cystic renal disease

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 Genetic cystic renal disease

Which specialists treat Genetic cystic renal disease?

23 specialists and care centers treating Genetic cystic renal disease are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.