CODEBOOK Chronic Kidney Disease in Children (CKID) Study: KIDHIST Summary File (Summary of Kidney History and Demographic Characteristics) 8-2-2021 Start ____Field____ Section/ Column Len Format Variable Question Description Code ------ --- --------- ---------------- ------------ ------------------------------ ------------------------------ 1 6 6.0 KID Participant ID 100000= 100000 . . 699999= 699999 7 9 9.3 DOB Date of birth (xxxx.yyy) 1988.000= January 1,1988 . . 2010.999= December 31,2010 -9= Missing 16 3 3.0 MALE1FE0 Child's gender 1= Male 0= Female -9= Missing 19 9 9.3 CKDONST Chronic Kidney Disease Onset 1988.000= January 1,1988 Date (xxxx.yyy) . . 2010.999= December 31,2010 CKDONST= DOB if PRIMDX=12,20, 50,51,52,53,54,57,58,60,61,62, 63,64,65,66 -9= Missing 28 9 9.3 DIAGDATE chronic Kidney Disease 1988.000= January 1,1988 diagnosis date (xxx.yyyy) . . 2010.999= December 31,2010 -9= Missing 37 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 40 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 43 9 9.3 BSDATE Date of visit 1a (xxxx.yyy) 2005.000= January 1,2005 . . 2013.336= May 1,2013 52 9 9.3 LDTLT50PD Last pre-replacement therapy 2005.000= January 1,2005 (RT) date with eGFR < 50% . decline of baseline eGFR . (xxxx.yyy) 2025.000= January 1,2025 61 4 4.0 LVLT50PD Last pre-replacement therapy 10= 10 (RT) visit with eGFR < 50% . decline of baseline eGFR . 90= 90 65 7 7.2 LGFRLT50PD Last pre-replacement therapy 1.0= 1.0 (RT) eGFR < 50% decline of . baseline eGFR, ml/min|1.73m2 . 120.0= 120.0 72 9 9.3 FDTGE50PD First pre-replacement therapy 2005.000= January 1,2005 (RT) date with eGFR >= 50% . decline of baseline eGFR . (xxxx.yyy) 2025.000= January 1,2025 2100.000= eGFR>= 50% decline of baseline has not occurred 81 4 4.0 FVGE50PD First pre-replacement therapy 10= 10 (RT) visit with eGFR >= 50% . decline of baseline eGFR . 90= 90 999= eGFR>= 50% decline of baseline has not occurred 85 7 7.2 FGFRGE50PD First pre-replacement therapy 1.0= 1.0 (RT) eGFR >= 50% decline of . baseline eGFR, ml/min|1.73m2 . 120.0= 120.0 -1= eGFR>= 50% decline of baseline has not occurred 92 9 9.3 LDATeGFRGE15 Last pre-replacement therapy 2005.000= January 1,2005 (RT) date with eGFR >= 15 . (xxxx.yyy) . 2025.000= January 1,2025 DOB= Date of Birth for KIDs coming into study with eGFR <15 101 3 3.0 LVISeGFRGE15 Last pre-RT visit with eGFR 10= 10 >= 15 . . 90= 90 -1= KIDs coming into study with eGFR <15 104 9 9.3 FDATeGFRLT15 First pre-RT date with eGFR 2005.000= January 1,2005 <15 (xxxx.yyy) . . 2025.000= January 1,2025 2100.00= Pre-RT date with eGFR < 15 has not occurred 113 4 4.0 FVISeGFRLT15 First pre-RT visit with eGFR 10= 10 <15 . . 90= 90 999= Pre-RT visit with eGFR <15 has not occurred 117 6 6.2 FeGFRLT15 Value of first pre-RT eGFR 1.0= 1.0 <15, ml/min|1.73m^2 . . 14.9= 14.9 -1= A pre-RT eGFR <15 has not occurred 123 9 9.3 LDATRTFREE Last date free of renal 2005.000= January 1,2005 replacement therapy (RRT) . (xxxx.yyy) . 2025.000= January 1,2025 132 9 9.3 FDATTRN First Transplant Date 2005.000= January 1,2005 (xxxx.yyy) . . 2025.000= January 1,2025 2100.00= Transplant has not occurred 141 3 3.0 TRNCONFIRM Transplant Confirmed 0= No 1= Yes -1= Not applicable -9= Missing 144 9 9.3 FDATDIAL First Dialysis Date (xxxx.yyy) 2005.000= January 1,2005 . . 2025.000= January 1,2025 2100.00= Dialysis has not occurred 153 3 3.0 DIALCONFIRM Dialysis Confirmed 0= No 1= Yes -1= Not Applicable -9= Missing 156 9 9.3 FDATDEAD First Date Known to be Dead 2005.000= January 1,2005 (xxxx.yyy) . . 2025.000= January 1,2025 2100.00= Death has not occurred 165 3 3.0 DEATHCNFRM Death Confirmed 0= No 1= Yes -1= Not applicable -9= Missing 168 3 3.0 CAUSEDTH Cause of Death 01= Pericarditis (incl Cardiac Tamponade) 02= Myocardial Infarction, Acute 03= Cerebrovascular 04= Embolism 05= GI Hemorrhage 06= Hemorrhage (other than 03 or 05) 07= Pulmonary Infection 08= Septicemia 09= Viral Hepatitis 10= Infection (Other than 07, 08 or 09) 11= Hyperkalemia 12= Pancreatitis 13= Malignancy 14= Suicide 15= Accidental, Treatment Related 16= Accidental, Not Treatment Related 17= Artherosclerotic Heart Disease 18= Cardiomyopathy 19= Cardiac Arrhythmia 20= Cardiac Arrest, Cause Unknown 21= Valvular Heart Disease 22= Pulmonary Edema Due to Exogenous Fluid 23= Cerebro-Vascular Accident Including Intracranial Hemorrhage 24= Ischemic Brain Damage/ Anoxic Enecephalopathy 25= Hemorrhage From Ruptured Vascular Aneurysm 26= Hemorrhage From Surgery 27= Viral Infection 28= Viral Infection (Not 32 or 33) 29= Tuberculosis 30= AIDS 31= Other Infection 32= Hepatitis B 33= Other Viral Infection 34= Gastro-Intestinal Hemorrhage 35= Seizures 36= Drug Overdose (Street Drugs) 37= Drug Overdose (Not 14 or 36) 98= Unknown 99= Other Identified Cause of Death -1= NA (Skipped) -9= Missing 171 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 174 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) 177 9 9.3 LDATSTDY last active study date (last 2005.000= January 1,2005 date at which scientific data . was collected; xxxx.yyy) . 2025.000= January 1,2025 186 9 9.4 U25eGFRbasehat exp(a) from model: 0.0001= 0.0001 log(U25eGFR)=a + b (time from . V1a) (N.B. PRE-RT GFRs ONLY) . 999.9999= 999.9999 -9= Follow-up <0.75 yrs or <2 GFR measurements 195 8 8.4 U25eGFRyrratio Annual Ratio of U25eGFR from 0.0001= 0.00001 exp(b) from model: . log(U25eGFR)=a + b (time from . V1a) (N.B. PRE-RT GFRs ONLY) 99.99999= 99.9999 -9= Follow-up <0.75 yrs or <2 GFR measurements 203 3 3.0 U25eCOUNT Number of Pre-RT U25eGFR 0= 0 measurements . . 20= 20 206 9 9.4 eGFRbasehat exp(a) from model: 0.0001= 0.0001 log(e2012GFR)=a + b (time . from V1a) (N.B. PRE-RT GFRs . ONLY) 999.9999= 999.9999 -9= Follow-up <0.75 yrs or <2 GFR measurements 215 8 8.4 eGFRyrratio Annual Ratio of e2012GFR from 0.0001= 0.0001 exp(b) from model: . log(e2012GFR)=a + b (time . from V1a) (N.B. PRE-RT GFRs 99.9999= 99.9999 ONLY) -9= Follow-up <0.75 yrs or <2 GFR measurements 223 4 3.0 eCOUNT Number of pre-RT e2012GFR 0= 0 measurements . . 20= 20 227 9 9.4 iGFRcbasehat exp(a) from model: 0.0001= 0.0001 log(iGFRc)=a + b (time from . V1a) (N.B. PRE-RT GFRs ONLY) . 999.9999= 999.9999 -9= Follow-up <0.75 yrs or <2 GFR measurements 236 8 8.4 iGFRcyrratio Annual Ratio of iGFRc from 0.0001= 0.0001 exp(b) from model: . log(iGFRc)=a + b (time from . V1a) (N.B. PRE-RT GFRs ONLY) 99.9999= 99.9999 -9= Follow-up <0.75 yrs or <2 GFR measurements 244 3 3.0 iCOUNT Number of Pre-RT iGFRc 0= 0 measurements . . 10= 10 247 6 $ VERSION Version number of data V01.01= Version 01, in Visit 01. . . V99.03= Version 03, in Visit 99.