Table 1 Synopsis of data obtained in ARegPKD

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

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