Table 1.
Data Collection Synopsis
| 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 |
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