CODEBOOK Chronic Kidney Disease in Children (CKID) Study: KIDHIST Summary File (Summary of Kidney History and Demographic Characteristics) 8-5-2020 UPDATED: 28JUL2020 Start ____Field____ Section/ Column Len Format Variable Question Description Code ------ --- --------- ---------------- ------------ ------------------------------ ------------------------------ 1 6 6.0 CASEID Participant ID 100000= 100000 . . 699999= 699999 7 9 9.3 DOB Year of birth 1988= 1988 . . 2013= 2013 -9= Missing 16 3 3.0 MALE1FE0 Child's gender 1= Male 0= Female -9= Missing 19 9 9.3 CKDONST Duration of Chronic Kidney -20.000= -20.000 Disease at baseline visit . . 0.000= 0.000 years .= missing 28 3 3.0 PRIMDX Primary CKD diagnosis code 10= Focal segmental glomerulosclerosis 11= Hemolytic uremic syndrome 12= Familial nephritis (Alport's) 13= IgA Nephropathy (Berger's) 14= Systemic immunological disease (including SLE) 15= Chronic glomerulonephritis 16= Membranoproliferative glomerulonephritis type I 17= Idiopathic cresentic glomerulonephritis 18= Membranous nephropathy 19= Henoch schonlein nephritis 20= Congenital nephrotic syndrome 21= Membranoproliferative glomerulonephritis type II 22= Sickle cell nephropathy 23= Denys-Drash syndrome 24= Diabetic nephropathy 40= Glomerular Other 50= Obstructive uropathy 51= Aplastic/hypoplastic/ dysplastic kidneys 52= Reflux nephropathy 53= Polycystic kidney disease (Autosomal recessive) 54= Cystinosis 55= Pyelonephritis/ Interstitial nephritis 56= Renal infarct 57= Medullary cystic disease/ Juvenile nephronophthisis 58= Syndrome of agenesis of abdominal musculature 59= Wilms' tumor 60= Polycystic kidney disease (Autosomal dominant) 61= Oxalosis 62= Congenital Urologic Disease (Bilateral Hydronephrosis) 63= Vactrel or Vater Syndrome 64= Perinatal Asphyxia 65= Branchio-oto-Renal Disease/Syndrome 66= Methylmalonic Acidemia 80= Non-Glomerular Other -9= Missing 31 3 3.0 GNGDIAG Child's Primary Diagnosis 1= Glom (HUS) (coded G vs NG) 2= Glom (NOT HUS) 3= Non-glom (GU, Cystic, Hereditary) 4= Non-glom (NOT GU, NOT Cystic, NOT Hereditary) -9= Missing/Unknown 34 9 9.3 BSDATE Year of baseline visit 2005= 2005 . . 2013= 2013 43 9 9.3 LDATRTFREE Last Date free of renal 0.000= 0.000 years replacement therapy (RRT) in . duration of year from the . baseline visit 50.000= 50.000 years 52 9 9.3 FDATTRN First Transplant Date in 0.000= 0.000 years duration of year from the . baseline visit . 50.000= 50.000 years 99.999= date after cut-off yr 61 9 9.3 FDATDIAL First Dialysis Date in 0.000= 0.000 years duration of year from the . baseline visit . 50.000= 50.000 years 99.999= date after cut-off yr 70 9 9.3 FDATDEAD First Date Known to be Dead 0.000= 0.000 years in duration of year from the . baseline visit . 50.000= 50.000 years 99.999= date after cut-off yr 79 3 3.0 CKDstat Subject's clinical kidney 0= No history of RT Event disease status at last visit/ 1= On or post dialysis contact 2= Post transplant 9= Death 82 3 3.0 stdystat Subject's status in the CKiD 0= Clinically active at last study study visit (last visstatus = 0,1,3, or 4) 1= Phone/In-Person Follow-up (PIP) or web follow-up (ePIP) at last study visit (last visstatus=5 or 6) 2= Clinical withdrawal (last visstatus=2) 3= Clinical UTFU (last visstatus=2) 4= RRT without further follow- up (last visstatus=2) 5= Pregnancy (last visstatus=2) 9= Disenrolled, no further contact (last visstatus=9) 85 9 9.3 LDATSTDY Last active study date (last 0.000= 0.000 years date at which scientific data . was collected) in duration of . year from the baseline visit 50.000= 50.000 years 94 6 $ VERSION Version number of data V01.01= Version 01, in Visit 01. . . V99.03= Version 03, in Visit 99.