Kindernephrologie - ADPedKD

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ADPedKD

An international web- based database for longitudinal data registry of children with Autosomal Dominant Polycystic Kidney Disease (ADPKD)

Status: Aktiv

Studienziel / Fragestellung

Primäres Prüfziel

To define disease Progression factors for pediatric ADPKD.

Sekundäre Prüfziele

  •  The development of clinical practice Guidelines: unified diagnostic, follow-up and Treatment approaches regarding modifable disease factors from childhood.
  • To identify clinical and/or bio-markers predicting the risk of early and progressive disease.

Diagnose

  • ADPKD

Autosomal Dominant Polyzystische Nierenerkrankung (ADPKD)

Patientenmerkmale

Einschlusskriterien

  • ADPKD diagnosed by positive family history and ultrasound (the presence of a single cyst, preferably >1 cm in diameter7) and/or molecular assessment
  • ADPKD diagnosed at the age of 19 years or younger
  • informed consent of patient and/or his/her parents/legal representatives
  • Contiguous gene syndrome TSC2-PKD1

Ausschlusskriterien

  • Other renal cysts diseases such as TSC, ARPKD, etc.
  • Genetic proof of another cystic kidney disorder
  • ADPKD diagnosed at an age older than 19 years

Studiendesign

Multizentrisch, Prospektiv, Retrospektiv

Dokumente (passwortgeschützt)

Prüfzentren

Köln

Klinik und Poliklinik für Kinder- und Jugendmedizin

Studienbüro

Status

Aktiv

Prüfer (Hauptprüfer im Zentrum)

Prof. Dr. med. Max Christoph Liebau

Stellvertretender Prüfer

  • Prof. Dr. med. Lutz T. Weber

Studienkontakt im Prüfzentrum