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Table 1 Data Collection Synopsis

From: Design and implementation of the canadian kidney disease cohort study (CKDCS): A prospective observational study of incident hemodialysis patients

Category

Data Collected

Baseline

Followup

Background and demographic information

Age, sex, race, dialysis start date, education, employment status, postal code (to allow linkage to census data), provincial health card number (for linkage), hospital unit number, social support

X

 

Medical history

Cause(s) of ESRD, tobacco use/dose, coronary disease, chronic heart failure, previous arrhythmia, cerebrovascular disease, peripheral vascular disease, diabetes mellitus, pulmonary disease, neurologic disease, psychiatric disease, musculoskeletal disease, gastrointestinal and hepatic diseases, cancer, eye disease, hepatitis, HIV, family history of premature CAD in first degree relatives

X

 

Pre-ESRD treatment

Nephrologist visit, interval between first nephrology visit and ESRD, vascular access, relevant labs (Hb, Ca, PO4, HCO3, albumin)

X

 

Vital signs

BP, HR, weight, height

X

X

Dialysis prescription

Time, dialyzer, dialysate composition, blood flow, Bioimpedance measurements

X

X

Functional Status

Specific study questionnaire, Health Utilities Index

X

X

Laboratory data

Routine laboratory data from dialysis monthly bloodwork

X

X

 

Frozen blood for biochemistry

  
 

Frozen plasma for special tests and proteomic studies (will not be thawed or refrozen)

  
 

Frozen blood for DNA/RNA

  
 

Frozen dialysate

  

Excess/deficiency of trace elements

Source water collection from home and dialysis unit

X

X

Residual renal function

Timed urine collection for urea/creatinine

X

X

Medications

List of medications and dose

X

X

Vascular access history

Type and location of current access, number of prior temporary and permanent accesses

X

X

Vascular access events

Type, location at start and end of interval; all changes in access status; procedures, creation/placement

X

X

Hospitalizations

Dates, diagnosis, and procedures for each interval hospitalization

 

X

Interval status

Dialysis status at end of reporting interval, date and cause of death

 

X

Determinants of Transplant referral

Patient and physician attitudes toward transplantation, intervals from transplant referral to transplant activation.

X

X

Quality of life

Kidney Disease Quality of Life Instrument (KDQOL)

X

X

Satisfaction with care

Specific study questionnaire

 

X

Coronary artery calcification/Cardiac geometry

Coronary CT scan/Cardiac MRI

X

 
  1. BP = Blood pressure, CAD = Coronary Artery Diseas, ESRD = Endstage renal disease, HR = Heart rate, KDOOL = Kidney Disease Quality of Life Instrument, Hb = Haemoglobin, Ca = Calcium, PO4 = Phosphate, HCO3, = Bicarbonate