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Table 1 Study schedule

From: Genetic identification of inherited cystic kidney diseases for implementing precision medicine: a study protocol for a 3-year prospective multicenter cohort study

Parameter

Screen

B0

1y

2y

Informed consent

v

   

Demographic information

v

   

Medical history

v

   

Eligibility confirmation

v

   

Recent events

  

v

v

Medications

 

v

v

v

Quality of life questionnaires (EQ-5D-5L (adult), PedsQL 4.0 Generic Core Scales (pediatric))

 

v

  

Depression assessment (PHQ-9)

 

v

  

Nutritional assessment (mSGA)

 

v

  

Systolic and diastolic blood pressure

 

v

v

v

Complete blood cell count (white blood cells, hemoglobin, platelet count, hematocrit, reticulocyte count, neutrophil count)

 

v

v

v

Serum calcium/phosphorus

 

v

v

v

Serum uric acid

 

v

v

v

Serum protein/albumin

 

v

v

v

Serum blood urea nitrogen/creatinine/estimated glomerular filtration rate

 

v

v

v

Plasma sodium/potassium/chloride/total carbon dioxide

 

v

v

v

Serum total cholesterol

 

v

  

Highly sensitive C-reactive protein

 

v

  

Urinalysis with microscopy

 

v

v

v

Spot urine protein/creatinine ratio

 

v

v

v

Spot urine uric acid

 

v

  

Spot urine sodium/potassium/chloride

 

v

  

Spot urine calcium/phosphorus

 

v

  

Spot urine osmolality

 

v

  

Kidney CT (adult) or abdomen sonography (pediatric)

 

v

  
  1. Abbreviations: CT Computed tomography, PedsQL Pediatric Quality of Life inventory, PHQ-9 Patient Health Questionnaire-9, mSGA Modified Subjective Global Assessment