Disease Directory Autosomal Recessive Polycystic Kidney Disease
Renal

Autosomal Recessive Polycystic Kidney Disease

Also known as: ARPKD, infantile polycystic kidney, PKHD1 disease

Prevalence

Approximately 1 in 20,000 live births

Onset

Prenatal / Neonatal (though milder cases present in childhood or adulthood)

Type

Rare inherited cystic kidney disease

Gene

PKHD1

About Autosomal Recessive Polycystic Kidney Disease

Autosomal recessive polycystic kidney disease is a severe fibrocystic disorder caused by mutations in PKHD1, encoding fibrocystin/polyductin, leading to bilateral renal enlargement with collecting duct ectasia and congenital hepatic fibrosis. Severe neonatal cases present with pulmonary hypoplasia due to oligohydramnios and carry high early mortality, while milder cases surviving infancy develop progressive renal failure and hepatic complications including portal hypertension. Unlike ADPKD, both kidneys and liver are invariably affected.

Common Clinical Features

Massively enlarged echogenic kidneys on prenatal ultrasound Neonatal respiratory distress (pulmonary hypoplasia) Hypertension in early childhood Progressive chronic kidney disease Congenital hepatic fibrosis Portal hypertension with varices Cholangitis and biliary complications

Clinical Trial Eligibility Tips

What to know before applying to Autosomal Recessive Polycystic Kidney Disease trials.

Genetic confirmation of biallelic PKHD1 mutations is required for most ARPKD trials; ensure both parents are tested if de novo variants are uncertain.

Hepatic involvement (fibrosis grade, portal pressure) is a critical co-eligibility variable, as some trials address kidney-predominant and others liver-predominant disease.

Paediatric trials frequently have age and weight thresholds; confirm enrolment windows with the coordinating centre, especially for neonatal or early infantile cases.

Patient Resources

Patient Organization

PKD Foundation

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Natural History Registry

ARPKD/CHF Alliance Registry

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Orphanet

European reference resource for rare diseases (ORPHA:731)

View on Orphanet ↗

NORD

National Organization for Rare Disorders

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Find recruiting Autosomal Recessive Polycystic Kidney Disease trials

Search 500,000+ studies from ClinicalTrials.gov, filtered for Autosomal Recessive Polycystic Kidney Disease. Updated daily.

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