0300 111 1234

International ARPKD Recommendations

ARPKD Autosomal Recessive Polycystic Kidney Disease) is a rare, ‘early-onset’ form of PKD. However, there are no consistent guidelines for care and management.

In 2013, expert doctors and scientists from 5 countries met to review the medical literature and develop recommendations for diagnosis, surveillance and clinical management. Dr Detlef Bockenhauer from Great Ormond St Hospital and Dr Larissa Kerecuk from Birmingham Children's Hospital attended to represent UK patients and families.

The first part of the recommendations were published in the International Journal of Pediatrics. See the link below.

The next set of recommendations will cover specialist care of ARPKD complications, such as dialysis, transplant and management of severe portal hypertension.

This is a great step forward in the clinical management of those born with ARPKD and provides a sound research base for the PKD Charity to campaign for specialised multi-disciplinary clinics in the UK covering the period before birth through to adulthood.

Download the first part of the ADPKD International Recommendations (PDF 188 KB)

Read our ARPKD Guide for Parents.

PKD Charity is a Member of

  • Fundraising Regulator Website
  • Visit PKD International website
  • Visit Ciliopathy Alliance website
  • Visit the Genetic Alliance UK website
  • Rare Disease UK Website
  • Specialised Healthcare Alliance Website
  • FEDERG Website
  • Visit EURORDIS website
  • KPIN