The Approach to Patients with Polycystic Kidney Disease: The Rational Bases for an Information Network on the Disease

Authors

  • Marco Galliani U.O.C. Nefrologia Dialisi e Litotrissia, Ospedale Sandro Pertini, Roma
  • Silvana Chicca U.O.C. Nefrologia Dialisi e Litotrissia, Ospedale Sandro Pertini, Roma
  • Elio Vitaliano U.O.C. Nefrologia Dialisi e Litotrissia, Ospedale Sandro Pertini, Roma
  • Antonio Paone U.O.C. Nefrologia Dialisi e Litotrissia, Ospedale Sandro Pertini, Roma
  • Maria Elena Tosti Centro Nazionale di Epidemiologia Sorveglianza e Promozione della Salute, Istituto Superiore di Sanità, Roma
  • Alfonso Mele Centro Nazionale di Epidemiologia Sorveglianza e Promozione della Salute, Istituto Superiore di Sanità, Roma

DOI:

https://doi.org/10.33393/gcnd.2014.929

Keywords:

Polycystic kidney disease, Genetics, Observational study, Ethical committee

Abstract

Autosomal dominant polycystic kidney disease (APDKD) is the most relevant hereditary disease in Nephrology being common in patients with renal failure or in hemodialysis. The disease has significant comorbidities complicating the everyday life of patients, and is characterized by a disabling set of symptoms: acute or chronic pain, abdominal obstruction, and gastrointestinal disorders. The natural history of the disease is still unknown, thus making it hard to plan and design the appropriate clinical approaches. A modern information network as well as a web database, aimed at gathering a variety of patient information (clinical and epidemiological), could be a valuable tool to identify more easily patients suffering from the disease and, thus, improve clinical management.