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Table 1 Synopsis of data obtained in ARegPKD

From: Rationale, design and objectives of ARegPKD, a European ARPKD registry study

Synopsis of data obtained in ARegPKD
Basic data
a Basic information with date of birth, sex, onset of symptoms and initial visit at doctor
b Family history
c Pre- and perinatal period/infancy
d Initial diagnosis
e Genetics
Initial visit/yearly follow-up visits
a Patient’s status – baseline evaluation (e.g. body-measurements, participation in studies, availability of biosamples)
b Renal status including symptoms, radiological findings, biopsy results
c Extrarenal status regarding liver (symptoms, radiological findings, biopsy results) and other organs (spleen, cardiovascular system, central nervous system, eyes, lungs, bones, blood)
d Laboratory values
e Medications with start and end date, dose
f Therapy including renal replacement therapy, surgical procedures and other procedures
g Further developments with inclusion of user-defined comments