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Study Detail

Study ID 1018
Name Hydroxyurea to Prevent Organ Damage in Children With Sickle Cell Anemia
Contact Email biolincc@imsweb.com 
Acronym Baby HUG
Period 2000 - 2009
Design Clinical Trial
Study PI Multiple PI's
Institution Multiple institutes
URL https://biolincc.nhlbi.nih.gov/studies/baby_hug/
CTGovID https://clinicaltrials.gov/ct2/show/NCT00006400
Funding Agency NHLBI, NICHD
Overview The purpose of this study is to determine if hydroxyurea therapy is effective in the prevention of chronic end organ damage in pediatric patients with sickle cell anemia.
Focus Areas Hydroxyurea Therapy
Outcomes 1. Treatment Differences of the Change in Qualitative Splenic Function From Baseline [ Time Frame: Before initiation of treatment and at 2 years ]
2. Change From Baseline in the Renal Function That Was Measured by Diethylenetriaminepentaacetic Acid (DTPA) Glomerular Filtration Rate (GFR) [ Time Frame: Before initiation of treatment and at 2 years ]
3. Change From Baseline in the Renal Function That Was Measured by Glomerular Filtration Rate (GFR) (Calculated Using Schwartz Formula) [ Time Frame: Before initiation of treatment and at 2 years ]
4. Change From Baseline in the Renal Function That Was Measured by GFR (Calculated Using New Schwartz Formula) [ Time Frame: Before initiation of treatment and at 2 years ]
Data Location BioLINCC
Biospecimen Available N/A
Data Consent Data sharing via BioLINCC; use of data is limited to research on sickle cell anemia and related disorders.
Biospecimen Consent Consent for use of cells, blood, or other samples for future research.
Contact Consent Yes, with permission on consent
Genomic Data No
Age Range 9–18 months
No. Subjects 193
Inclusion Criteria Majority fetal and sickle (FS or SF) hemoglobin pattern confirmed centrally by electrophoresis (screening may begin at 7 months of age)
Exclusion Criteria 1. Chronic transfusion therapy
2. Cancer
3. Less than 5th percentile (10th percentile for the pilot study) height, weight, or head circumference for age
4. Severe developmental delay (e.g., cerebral palsy or other mental retardation, Grade III/IV intraventricular hemorrhage)
5. Stroke with neurological deficit
6. Surgical splenectomy
7. Participating in other clinical intervention trials
8. Probable or known diagnosis of Hemoglobin S-Hereditary Persistence of Fetal Hemoglobin
9. Known hemoglobin S-beta plus thalassemia (hemoglobin A present)
10. Any condition or chronic illness, which in the opinion of the principal investigator, makes participation unadvised or unsafe
11. Inability or unwillingness to complete baseline (pre-enrollment) studies, including blood or urine specimen collection, liver-spleen scan, abdominal sonogram, neurological examination, neuropsychological testing, or transcranial Doppler ultrasound (interpretable study not required, but confirmed velocity greater than 200 cm/sec results in ineligibility)
12. Previous or current treatment with hydroxyurea (HU) or another anti-sickling drug
13. The following exclusion criteria are transient; patients can be re-evaluated for eligibility:1. Hemoglobin less than 6.0 gm/dL2. Reticulocyte count less than 80,000/cu mm if hemoglobin is less than 9 gm/dL3. Neutrophil count less than 2,000/cu mm4. Platelet count less than 130,000/cu mm5. Blood transfusion in the 2 months prior to study entry unless HbA is less than 10%6. ALT greater than twice the upper limit of normal7. Ferritin less than 10 ng/ml8. Serum creatinine greater than twice the upper limit of normal for age9. Bayley standardized mental score below 70
Study Documentation
  Select All
   1. Baby_HUG_DD_2020a
   2. BABY_HUG_Follow-up_Study_I_Manual_of_Operations
   3. BABY_HUG_Follow-up_Study_I_Protocol
   4. BABY_HUG_Follow-up_Study_II_Manual_of_Operations
   5. BABY_HUG_Follow-up_Study_II_Protocol
   6. BABY_HUG_Phase_III_RCT_Manual_of_Operations
   7. BABY_HUG_Phase_III_RCT_Protocol
Forms
  Select All
   1. BABY_HUG_Follow-up_Study_I_Annotated_CRFs
   2. BABY_HUG_Follow-up_Study_II_Annotated_CRFs
   3. BABY_HUG_Phase_III_RCT_Annotated_CRFs
   4. BABY_HUG_FUPI_Form001_Enrollment
   5. BABY_HUG_FUPI_Form002_Patient_Treatment_Plan
   6. BABY_HUG_FUPI_Form003_Study_Entry
   7. BABY_HUG_FUPI_Form010_Clinical_Data_Report
   8. BABY_HUG_FUPI_Form011_48Month_Exit_Laboratory_Tests
   9. BABY_HUG_FUPI_Form012_Exit_Form
   10. BABY_HUG_FUPI_Form013_24Month_Transcranial_Exam
   11. BABY_HUG_FUPI_Form020_24Month_Special_Tests_Laboratory_Tests
   12. BABY_HUG_FUPI_Form021_Liver_Spleen_Scan_Performance
   13. BABY_HUG_FUPI_Form022_DTPA_GFR
   14. BABY_HUG_FUPI_Form023_Abdominal_Sonogram_Performance
   15. BABY_HUG_FUPI_Form024_WPPSI_Form
   16. BABY_HUG_FUPI_Form025_Serious_Adverse_Event
   17. BABY_HUG_FUPI_Form26_Stem_Cell_Transplant_Report
   18. BABY_HUG_FUPI_Form27_Vineland_Summary
   19. BABY_HUG_FUPI_Form31_Liver_Spleen_Central_Reading
   20. BABY_HUG_FUPI_Form33_Abdominal_Sonogram_Central_Reading
   21. BABY_HUG_FUPI_Form101_St_Jude_Transmittal_Form
   22. BABY_HUG_FUPII_Form01_ENROLLMENT
   23. BABY_HUG_FUPII_Form03_CENTRAL_LAB_COLLECTION_ENTRY_Q12_MONTHS_EXIT
   24. BABY_HUG_FUPII_Form04_LOCAL_LABORATORY_RESULTS
   25. BABY_HUG_FUPII_Form10_CLINICAL_DATA_REPORT
   26. BABY_HUG_FUPII_Form12_EXIT_FORM
   27. BABY_HUG_FUPII_Form13_TRANSCRANIAL_DOPPLER_EXAM
   28. BABY_HUG_FUPII_Form14_Physical_Examination
   29. BABY_HUG_FUPII_Form15_QUESTIONNAIRE
   30. BABY_HUG_FUPII_Form20_SPECIAL_TESTS
   31. BABY_HUG_FUPII_Form21_LIVER_SPLEEN_SCAN_PERFORMANCE
   32. BABY_HUG_FUPII_Form23_ABDOMINAL_SONOGRAM_PERFORMANCE
   33. BABY_HUG_FUPII_Form25_SERIOUS_ADVERSE_EVENT
   34. BABY_HUG_FUPII_Form26_STEM_CELL_TRANSPLANT_REPORT
   35. BABY_HUG_FUPII_Form27_VINELAND_SUMMARY
   36. BABY_HUG_FUPII_Form28_WISC-IV
   37. BABY_HUG_FUPII_Form29_PedsQL
   38. BABY_HUG_FUPII_Form30_CONNERS_CONTINUOUS_PERFORMANCE_TEST_II
   39. BABY_HUG_FUPII_Form31_PULMONARY_FUNCTION_TESTING
   40. BABY_HUG_FUPII_Form32_ECHOCARDIOGRAM_PERFORMANCE
   41. BABY_HUG_FUPII_Form33_MRI_MRA_PERFORMANCE
   42. BABY_HUG_FUPII_Form40_LIVER_SPLEEN_CENTRAL_READING
   43. BABY_HUG_FUPII_Form41_ABDOMINAL_SONOGRAM_CENTRAL_READING
   44. BABY_HUG_FUPII_Form44_MRA_READING
   45. BABY_HUG_FUPII_Form50_MAJOR_EVENT
   46. BABY_HUG_Form04_ELIGIBILITY_SCREENING_I
   47. BABY_HUG_Form05_ELIGIBILITY_SCREENING_II
   48. BABY_HUG_Form06_HISTORY_PHYSICAL_EXAMINATION_AT_ENTRY
   49. BABY_HUG_Form07_DEMOGRAPHIC_HOUSEHOLD_INFORMATION
   50. BABY_HUG_Form08_GROWTH_HISTORY
   51. BABY_HUG_Form21_TREATMENT_INITIATION_VISIT
   52. BABY_HUG_Form22_DTPA_GFR_HU_ASSAY
   53. BABY_HUG_Form23_HU_ASSAY_1MONTH_POST_TREATMENT_INITIATION
   54. BABY_HUG_Form31_STUDY_VISIT
   55. BABY_HUG_Form32_MISSED_VISIT
   56. BABY_HUG_Form33_QUARTERLY_VISIT
   57. BABY_HUG_Form34_SIX_MONTH_18_MONTH_VISIT
   58. BABY_HUG_Form35_TWELVE_MONTH_VISIT
   59. BABY_HUG_Form36_END_RANDOMIZED_STUDY_TREATMENT
   60. BABY_HUG_Form37_LOCAL_CBC_RESULTS
   61. BABY_HUG_Form38_HOLD_RESTART
   62. BABY_HUG_Form40_BAYLEYS
   63. BABY_HUG_Form41_VINELAND_SUMMARY
   64. BABY_HUG_Form43_NEUROLOGICAL_EXAMINATION_QUESTIONNAIRE
   65. BABY_HUG_Form44_LIVER_SPLEEN_SCAN_PERFORMANCE
   66. BABY_HUG_Form45_ABDOMINAL_SONOGRAM_PERFORMANCE
   67. BABY_HUG_Form46_TRANSCRANIAL_DOPPLER_PERFORMANCE
   68. BABY_HUG_Form47_MRI_MRA_ELIGIBILITY_READING
   69. BABY_HUG_Form50_REPORTABLE_EVENT_HOSPITALIZATION
   70. BABY_HUG_Form51_CONCOMITANT_MEDICATIONS
   71. BABY_HUG_Form52_PREOPERATIVE_TRANSFUSION
   72. BABY_HUG_Form64_TREATMENT_STOP_ORDER
   73. BABY_HUG_Form65_RESTART_TREATMENT_ORDER
   74. BABY_HUG_Form66_STUDY_TREATMENT_DOSING_IRREGULARITY
   75. BABY_HUG_Form80_ADDITIONAL_INFORMATION_FORM
   76. BABY_HUG_Form81_MRI_READING
   77. BABY_HUG_Form82_MRA_READING
   78. BABY_HUG_Form84_LIVER_SPLEEN_SCAN_CENTRAL_READING
   79. BABY_HUG_Form85_ABDOMINAL_SONOGRAM_CENTRAL_READING
   80. BABY_HUG_Form87_CLINICAL_EVENTS_CLASSIFICATION

Data ElementVariables
Acute Anemic Episode
Aplastic Crisis APLCR_NA
APLCRBL
Bleeding
Other Blood Problem
Sickle Cell Disease SBTHALBL
Data ElementVariables
Cancer MALIGBL
Data ElementVariables
Gastrointestinal Problem CONST
SOILY_UW
Hepatitis
Liver Problem
Data ElementVariables
Family MedHx FM_SCD
SIB_ENR
WTBD_FM
Data ElementVariables
General Health CHC_NAME
GROW_STP2
ILLNESS
OVERWGHT2
PICA_1
PICA_2
PICA_OBS
Data ElementVariables
Genitourinary Problem ALARM_S
ALARM_T
DDAVP_S
DDAVP_T
FLURES_S
FLURES_T
NT_URI
NTURIFRQ
PROT_S
PROT_T
THRPY_S
THRPY_T
TOFR_S
TOFR_T
WET_3MON
WET_DAY
WET_FRQ
WKP_S
WKP_T
Kidney Problem RENTRANS
Priapism PRIAP30M
PRIAP4HR
PRIAPAGE
PRIAPBL
PRIAPEP1
PRIAPEP2
PRIAPNA
PRIAPWRD
SRC_DR
SRC_FR
SRC_INFO
SRC_OTH
SRCOTHSP
Renal Dialysis History DIALYS_C
DIALYS_L
Data ElementVariables
Fever FEVER_NA
FEVER31
FEVERBL
HXFEVNCR
HIV Infection
Immune Problem
Infection ACOSTBON
ACOSTORG
MENIN_NA
MENINBL
MNGTBACT
SEPORGGN
SEPORGSS
SEPSBACT
SEPSISBL
SEPSISNA
Vaccination CD42YND
CD4BLND
CD4EDSND
DT12MND
DT12MSEQ
DT4MND
DT4MSEQ
DT6MND
DT6MSEQ
DT6WND
DT6WSEQ
HB12MND1
HB12MSQ1
HB2WND
HB2WSEQ
HB6WND
HB6WSEQ
HO12MND
HO12MSEQ
HO4MND
HO4MSEQ
HO6MND
HO6MSEQ
HO6WND
HO6WSEQ
MM12MND
MM12MSEQ
MMA12MND
MMA2YND
MMAEOSND
OC2YND
OCAEOSND
OP12MND
OP12MSEQ
OP4MND
OP4MSEQ
OP6WND
OP6WSEQ
OPBLND
PCAB2YND
PN12MND
PN12MSEQ
PN2YND
PN2YSEQ
PN4MND
PN4MSEQ
PN6MND
PN6MSEQ
PN6WND
PN6WSEQ
VACCINE
VR12MND
VR12MSEQ
Data ElementVariables
Sarcoidosis
Spleen Problem DIAG_SPLENIC_SEQU
SPLENECTOMY_ND
SPLNHMGL
SPLNHMGL
SPLNSIZE
SPLNSIZE_DURING
SPLNSIZE_PRIOR
SPLPTCNT
SPLPTCNT
SPLSEQBL
SPLSEQNA
Data ElementVariables
Adverse event
Death DEATH
HX_DEATH
Disability Status PERMDISA
PNEWDISA
SNEWDISA
Hospitalization
Medical Event
Serious Adverse Event ABD_SONO_DT_DAYS
ADM_DT_DAYS
ATTR_TRT
BLOOD_SPEC_DT_DAYS
CHRTRAN
DIAGUNXP
DIALYS_L
DISCH_DT_DAYS
DTPA_NA
E_END_DT_DAYS
HX_ACS
HX_STROKE_TIA
HXSPLSEQ
ICU
LIFE_THREAT_EVT
LIVER_SPLEEN_DT_DAYS
LONGHOSP
NUMDAYS
ONSET_DT_DAYS
PAR_ANTI
PROBLEM
SEVERITY
SPLCTMY
START_DT_DAYS
TR_TYPE
TRANSFUS
TRVOLPR2
TRVOLWBL
TSTOP_DT_DAYS
TSTRT_DT_DAYS
VISIT_DT_DAYS
WPPSI_NA
Data ElementVariables
Musculoskeletal Problem
Osteomyelitis OSTEOMBL
OSTEOMNA
Osteonecrosis
Rheumatic Diseases
Data ElementVariables
Behavior ATTNDD
BEHPCTL
BEHRAW
DDENDROW
DDSTROW
DLS95CL
DLSPCTL
DLSRAW
DLSSTRD
SDENDROW
SDSTROW
SOC95CL
SOCPCTL
SOCRAW
SOCSTRD
Cognition AGE_MONTHS
AGE_YEARS
BD
BD_1
BD_10
BD_11
BD_12
BD_13
BD_14
BD_15
BD_16
BD_17
BD_18
BD_19
BD_2
BD_20
BD_3
BD_4
BD_5
BD_6
BD_7
BD_8
BD_9
BD_SCORE
CD
CDENDROW
CDSTROW
CMPHN_1
CMPHN_10
CMPHN_11
CMPHN_12
CMPHN_13
CMPHN_14
CMPHN_15
CMPHN_16
CMPHN_17
CMPHN_18
CMPHN_19
CMPHN_2
CMPHN_20
CMPHN_3
CMPHN_4
CMPHN_5
CMPHN_6
CMPHN_7
CMPHN_8
CMPHN_9
CMPHN_SCORE
CO
COD_SCORE
COM95CL
COMMI_G
COMMI_P
COMMI_T
COMMI_V
COMPCTL
COMRAW
COMSTRD
DETECT_G
DETECT_P
DETECT_T
DETECT_V
DS
FAIQ
FSIQ_COMP
FSIQ_CONFINT
FSIQ_CONFINT_HIGH
FSIQ_PERCENT
FSIQ_SCALED
GL_COMP
GL_CONFINT
GL_CONFINT_HIGH
GL_PERCENT
GL_SCALED
INFO_1
INFO_10
INFO_11
INFO_12
INFO_13
INFO_14
INFO_15
INFO_16
INFO_17
INFO_18
INFO_19
INFO_2
INFO_20
INFO_21
INFO_22
INFO_23
INFO_24
INFO_25
INFO_26
INFO_27
INFO_28
INFO_29
INFO_3
INFO_30
INFO_31
INFO_32
INFO_33
INFO_34
INFO_4
INFO_5
INFO_6
INFO_7
INFO_8
INFO_9
INFO_SCORE
LN
MEN95CIH
MEN95CIL
MENMDI
MENRAW
MR
MR_1
MR_10
MR_11
MR_12
MR_13
MR_14
MR_15
MR_16
MR_17
MR_18
MR_19
MR_2
MR_20
MR_21
MR_22
MR_23
MR_24
MR_25
MR_26
MR_27
MR_28
MR_29
MR_3
MR_4
MR_5
MR_6
MR_7
MR_8
MR_9
MR_SCORE
OA_1
OA_10
OA_11
OA_12
OA_13
OA_14
OA_2
OA_3
OA_4
OA_5
OA_6
OA_7
OA_8
OA_9
OA_SCORE
OMI_G
OMI_P
OMI_T
OMI_V
PC
PCOMP_1
PCOMP_10
PCOMP_11
PCOMP_12
PCOMP_13
PCOMP_14
PCOMP_15
PCOMP_16
PCOMP_17
PCOMP_18
PCOMP_19
PCOMP_2
PCOMP_20
PCOMP_21
PCOMP_22
PCOMP_23
PCOMP_24
PCOMP_25
PCOMP_26
PCOMP_27
PCOMP_28
PCOMP_29
PCOMP_3
PCOMP_30
PCOMP_31
PCOMP_32
PCOMP_4
PCOMP_5
PCOMP_6
PCOMP_7
PCOMP_8
PCOMP_9
PCOMP_SCORE
PCON_1
PCON_10
PCON_11
PCON_12
PCON_13
PCON_14
PCON_15
PCON_16
PCON_17
PCON_18
PCON_19
PCON_2
PCON_20
PCON_21
PCON_22
PCON_23
PCON_24
PCON_25
PCON_26
PCON_27
PCON_28
PCON_3
PCON_4
PCON_5
PCON_6
PCON_7
PCON_8
PCON_9
PCON_SCORE
PERS_G
PERS_P
PERS_T
PERS_V
PIQ_COMP
PIQ_CONFINT
PIQ_CONFINT_HIGH
PIQ_PERCENT
PIQ_SCALED
PN_1
PN_10
PN_11
PN_12
PN_13
PN_14
PN_15
PN_16
PN_17
PN_18
PN_19
PN_2
PN_20
PN_21
PN_22
PN_23
PN_24
PN_25
PN_26
PN_27
PN_28
PN_29
PN_3
PN_30
PN_4
PN_5
PN_6
PN_7
PN_8
PN_9
PN_SCORE
PRI
PS_COMP
PS_CONFINT
PS_CONFINT_HIGH
PS_PERCENT
PS_SCALED
PSI
RESP_G
RESP_P
RESP_T
RESP_V
RT_G
RT_P
RT_T
RT_V
RTBCHG_G
RTBCHG_P
RTBCHG_T
RTBCHG_V
RTICHG_G
RTICHG_P
RTICHG_T
RTICHG_V
RTSE_G
RTSE_P
RTSE_T
RTSE_V
RV_1
RV_10
RV_11
RV_12
RV_13
RV_14
RV_15
RV_16
RV_17
RV_18
RV_19
RV_2
RV_20
RV_21
RV_22
RV_23
RV_24
RV_25
RV_26
RV_27
RV_28
RV_29
RV_3
RV_30
RV_31
RV_32
RV_33
RV_34
RV_35
RV_36
RV_37
RV_38
RV_4
RV_5
RV_6
RV_7
RV_8
RV_9
RV_SCORE
SEBCHG_G
SEBCHG_P
SEBCHG_T
SEBCHG_V
SEICHG_G
SEICHG_P
SEICHG_T
SEICHG_V
SI
SIM_1
SIM_10
SIM_11
SIM_12
SIM_13
SIM_14
SIM_15
SIM_16
SIM_17
SIM_18
SIM_19
SIM_2
SIM_20
SIM_21
SIM_22
SIM_23
SIM_24
SIM_3
SIM_4
SIM_5
SIM_6
SIM_7
SIM_8
SIM_9
SIM_SCORE
SS
SS_SCORE
VARI_G
VARI_P
VARI_T
VARI_V
VC
VCI
VIQ_COMP
VIQ_CONFINT
VIQ_CONFINT_HIGH
VIQ_PERCENT
VIQ_SCALED
VOC_1
VOC_10
VOC_11
VOC_12
VOC_13
VOC_14
VOC_15
VOC_16
VOC_17
VOC_18
VOC_19
VOC_2
VOC_20
VOC_21
VOC_22
VOC_23
VOC_24
VOC_25
VOC_3
VOC_4
VOC_5
VOC_6
VOC_7
VOC_8
VOC_9
VOC_SCORE
WMI
WR_1
WR_10
WR_11
WR_12
WR_13
WR_14
WR_15
WR_16
WR_17
WR_18
WR_19
WR_2
WR_20
WR_21
WR_22
WR_23
WR_24
WR_25
WR_26
WR_27
WR_28
WR_3
WR_4
WR_5
WR_6
WR_7
WR_8
WR_9
WR_SCORE
Developmental ADJ_DAYS
ADJ_MO
BRPMAGMN
BRPMAGYR
DEVDELAY
DIAP_DAY
DIAPNITE
MLPMAGMN
MLPMAGYR
MRPMAGMN
MRPMAGYR
SWALLOW
WALKCLMB
WET_ACC
WETSNITE
Motor CIRCGTL
CIRCGTR
CORARMPL
CORARMPR
CRWL9IN
DECRSWNL
DECRSWNR
HYPOTOND
HYPOTONS
HYPRTOND
HYPRTONS
KNEEFLXL
KNEEFLXR
KNEHYPEL
KNEHYPER
LOSSFMTR
LOSSGMTR
LOSSSTLL
LOSSSTLU
LOSSSTRG
LOSSSTRL
LOSSSTRU
LOSSTONE
MOT95CIH
MOT95CIL
MOTPDI
MOTRAW
MSENDROW
MSSTROW
MTSK95CL
MTSKPCTL
MTSKRAW
MTSKSTRD
PULL2STD
RFLXACL
RFLXACR
RFLXAJL
RFLXAJR
RFLXARL
RFLXARR
RFLXBICL
RFLXBICR
RFLXKJL
RFLXKJR
RFLXUPTL
RFLXUPTR
STDUPALN
STEP3ALN
STEP3HOL
STEP3SPT
STND30S
STND3SEC
TOEWALKL
TOEWALKR
WALK6FT
WALKINDE
Sensation DESCLOSL
DESCLOSR
SENSLOSS
TINGNUMB
Data ElementVariables
Meningitis
Neurologic Event PALSYBL
Seizure SEIZFBBL
SEIZFBNA
SEIZNFBL
SEIZNFNA
SEIZURE
Stroke BALANCE
CHG_MENT
DIFF_SEE
DIFFSWAL
HEADACHE
LOS_CONS
NEW_STRK
NEW_TIA
PARALYS
SEIZURE
SPEECH
STROKEBL
Transient Ischemic Attack TIABL
TIABL_NA
Data ElementVariables
Abdominal Pain
General Pain PAIN_EPISODES
PAIN2
Headache
Management
Pain Attack PAINBL
PAINBLNA
Skeletal and Joint Pain AGEDACNA
AGEDACT
DACTBL
DACTBLNA
Data ElementVariables
Acute Chest Syndrome ACSMVENT
ACSMVENT
ACSNINF
ACSNINF
ACSOXADM
ACSOXADM
ACSSRAP
ACSSRAP
ASCBL
ASCBL_NA
Asthma
Lung Disease
Other Respiratory Problem
Data ElementVariables
Sleep Problem BRTHLOUD2
BRTHMTH2
BRTHSTP2
BRTHTRBL2
DP_SLPER
DRK_CAFF
DRYMTH2
SLP_PROB2
SLPY_DAY2
SNORE2
SNR_HLFT2
SNR_LOUD2
WETBED2
WKP_HARD2
WKP_HDCH2
WKPRFRSH2
Data ElementVariables
Cardiovascular
Digestive CHOLCTMY
CHOLECYSTECTOMY_ND
Genitourinary
Lymphatic SPLCTMY
SPLENCBL
SPLENECTOMY_NOT_DONE
TONSILLECTOMY_ND
Musculoskeletal
Ocular
Respiratory
Surgery History EAR_NOT_DONE
SURGERY
SURGERY_OTHER
Data ElementVariables
Address
Age AGE_MON
AGE_YR
AGEINCL4
AGEINCL5
BRCHAGMN
BRCHAGYR
CHRAGEMN
CHRAGEYR
GEST_AGE
GESTAGNA
MLCHAGMN
MLCHAGYR
MRCHAGMN
MRCHAGYR
WILL1217
Ethnic Group CARIBBN
Gender GENDER
MALE
SEX
Language
National Origin
Nuclear Family
Race ASIAN
ETHUNKN
NHWNOPIS
RACEG
Data ElementVariables
Community ROOMS
Individual
Data ElementVariables
Annual Income FAMINCOMG
Education
Employment Status
Household ADULT
CHLDN
Insurance AMNGCARE
MEDICAID
MEDICARE
NOINSRNC
PRIVTINS
STATEPRG
Marital Status
Data ElementVariables
Facility Type
Provider Type
Quality of Care
Visit ACUTE_CHEST_SYNDROME
ACUTE_SPLENIC_SEQUES
APLASTIC_CRISIS
CLINIC_VISITS
CLINIC_VISITS
DIAG_SPENIC_SEQUES
DIAGNOSIS_APLASTIC
DIAGNOSIS_CHEST
DIAGNOSIS_FEVER
DIAGNOSIS_NO_FEVER
DIAGNOSIS_PAIN
DIAGNOSIS_STROKE
DIAGNOSIS_SURGERY
DIAGNOSIS_TRAUMA
DIAGNOSIS_URINARY
ER_12M
ER_NUM
ER_VISITS
FEVER_FEBRILE
HU_TOXICITY_ASSESS
HU_TOXICITY_ASSESS
NO_FEVER
OTHER_CRISIS
OTHER_VISITS
OTHER_VISITS
OTHER_VISITS_2
OTHER_VISITS_2
OVNT_12M
OVNT_NUM
PAIN
PERIODIC_CLIN_VIS
PERIODIC_CLIN_VIS
SITUATION
STROKE_SEIZURE
TRAUMA
URINARY_TRACT_INFECT
Data ElementVariables
Final Diagnosis ER_RSN
OVNT_RSN
Hospitalization HOSP_NA
HOSPBL
HOSPITAL_TIMES
HOSPTLZD
LONGHOSP
N_EVTS
ICU ICU
Data ElementVariables
Angiogram F50ARTGR
Data ElementVariables
Abdomen
Bone
Brain CT_ABNORMAL
CT_NOT_DONE
F50CTBR
Chest
Data ElementVariables
Echocardiogram CARDIAC_ABNORMAL
CARDIAC_NOT_DONE
CARDIAC_UNKNOWN
Data ElementVariables
Electrocardiogram (ECG) BNP
BP_DIASTOLIC_1ST
BP_MEAN_1ST
BP_SYSTOLIC_1ST
CARETAKER_OBJ
COMPLIC_DURING
COMPLICATION_SP
COMPLICATIONS
CV_ABNORMAL
DOPPLER_STRIP
EQUIP_AVAIL
ILLNESS_SUB
INCOM_OTHER
INCOM_UNK
MMODE_STRIP
P18_DX1
P18_STATUS1
PT_STATE
Data ElementVariables
Electroencephalogram EEG_ABNORMAL
EEG_NOT_DONE
Data ElementVariables
Brain ABLACA
ABLICA
ABLMCA
ABMRA
ABRACA
ABRICA
ABRMCA
ATR_FOCL
ATR_GENL
ATR_SEV
ATRFSULC
ATRFVENT
ATRGSULC
ATRGVENT
ATROPHY
BLDVSLS
BONY_CHG
F50MRA
F50MRI
FINDINGS
FOCAL_SP
INVSEG1
INVSEG2
INVSEG3
INVSEG4
INVSEGL1
INVSEGL2
INVSEGL3
INVSEGL4
INVSEGR1
INVSEGR2
INVSEGR3
INVSEGR4
LSNA_LC1
LSNA_SID
LSNA_SIZ
LSNA_TYP
LSSBASIL
LSSLACA
LSSLICA
LSSLMCA
LSSMRA
LSSRACA
LSSRICA
LSSRMCA
MRA_ABNORMAL
MRA_NOT_DONE
MRA_UNKNOWN
MRI_NOT_DONE
MRI_RESULTS
MRI_RESULTS
MRI_RESULTS_SP
MRI_UNKNOWN
MRIMRA_EQPT
MRIMRA_QUALITY
ORBASIL
ORLACA
ORLICA
ORLMCA
ORMRA
ORRACA
ORRICA
ORRMCA
OTHLESN
VRIABZ
VRIACA_L
VRIACA_R
VRIBSL
VRICSB
VRIICC_L
VRIICC_R
VRIICS_L
VRIICS_R
VRIMCA_L
VRIMCA_R
VRIPBZ
VRIPCA_L
VRIPCA_R
VRISTR
Heart
Hip
Liver
Data ElementVariables
Heart
Kidney DSSAPOST
DSSAPRE
DTPADOSE
DTPAHR
DTPAMN
FORDTPA
FORHR
FORMN
GFRDTP_A
GFRDTP_B
GFRDTP_C
ONEDTPA
ONEHR
ONEMN
ROOMFRST
STNDFRST
STSAPOST
STSAPRE
STSASTAC
TWODTPA
TWOHR
TWOMN
Liver KALIVCNT
KALIVPIX
KALIVTOT
KPLIVCNT
KPLIVPIX
KPLIVTOT
LIVSP_ABNORMAL
LIVSP_NOT_DONE
LIVSP_UNKNOWN
TALIVCNT
TALIVPIX
TALIVTOT
TPLIVCNT
TPLIVPIX
TPLIVTOT
Spleen ANTPOSMN
ANTPOSSC
AOI400K
AOITIMED
CAMANGLE
CAMMODEL
CAMTYPE
COLLIMAT
DOSINJ44
IMCOM_TIME
IMSTR_TIME
INJ44_TIME
KASPLCNT
KASPLPIX
KASPLTOT
KPSPLCNT
KPSPLPIX
KPSPLTOT
KSLRTCNT
KSLRTTOT
OBLIMCNT
SPL_DCRS
SPLUPT
SPLUPT84
SUPCOLLD
TASPLCNT
TASPLPIX
TASPLTOT
TPSPLCNT
TPSPLPIX
TPSPLTOT
TSLRTCNT
TSLRTTOT
Data ElementVariables
Brain F50PTBR
Data ElementVariables
Brain COMPEXAM
F50TCD
FM13_ND
INCEX_SP
INCEXAM
POS_SP
PTNTPOS
TCD_IMAGE_RESULTS
TCD_IMAGE_YN
TCD_NUM
TCD1
TCD1_RESULT
TCD2
TCD3
TCD4
Data ElementVariables
Abdomen ABD_ABNORMAL
ABD_NOT_DONE
ABD_NPO
ABD_UNKNOWN
ABDABN85
ABDSEQPT
ABDSTRNS
ACCSPL85
F80III2F
F80III5A
LKECEX85
LKECHO85
LKID85
LKRPAR85
LKRPEX85
LKVOL85
LVRENL85
RKECEX85
RKECHO85
RKIDN85
RKRPAR85
RKRPEX85
RKVOL85
SPLANP85
SPLCLN85
SPLEEN85
SPLHOM85
SPLTRN85
SPLVLCAL
SPLVOL85
SPLVOLND
STATUS45
Gallbladder GALBLA85
GBCBD85
GBCDV85
GBIHEP85
GBLGST85
GBLGSTNA
GBMSTN85
GBNSTN85
GBPAND85
GBPRFL85
GBSFM85
GBSLDG85
GBWALL85
Penis
Data ElementVariables
Demographics
Socioeconomic Status EDU_FG
EDU_MG
MRTLST_FG
MRTLST_MG
OCAS35HL
OCAS35HM
OCEMP5YR
OCFTWORK
OCKHOUSE
OCPTWORK
OCRTOCPNG
OCSCHOOLG
OCUNEMPL
OCVRWORK
OCWORKG
PCAS35HL
PCAS35HM
PCEMP5YR
PCFTWORK
PCKHOUSE
PCPTWORK
PCRTOCPNG
PCSCHOOLG
PCUNEMPL
PCVRWORK
PCWORKG
Data ElementVariables
Psychosocial
Relationship CARE_OTHER
CARE40G
CARE41G
OTHCRTKRG
PRCARTKRG
RLTN_SP
RLTNSHP
Data ElementVariables
Quality of Life CONC_WK
MSWK_30D
RTN_WK
WKOTSDHM
Data ElementVariables
Pain SCRPT_A1
SCRPT_A2
SCRPT_A3
SCRPT_A4
SCRPT_A5
SCRPT_A6
SCRPT_A7
SCRPT_A8
SPRPT_A1
SPRPT_A2
SPRPT_A3
SPRPT_A4
SPRPT_A5
SPRPT_A6
SPRPT_A7
SPRPT_A8
Data ElementVariables
Cognitive Functioning DIFF_ORG2
DISTRACT2
FCRPT_C1
FCRPT_C2
FCRPT_C3
FCRPT_C4
FCRPT_C5
FCRPT_C6
FIDGET2
FPRPT_C1
FPRPT_C2
FPRPT_C3
FPRPT_C4
FPRPT_C5
FPRPT_C6
IGNRPPL2
INTRDOTH2
OVERACT2
Emotional Functioning GCRPT_B1
GCRPT_B2
GCRPT_B3
GCRPT_B4
GCRPT_B5
GPRPT_B1
GPRPT_B2
GPRPT_B3
GPRPT_B4
GPRPT_B5
SCRPT_D1
SCRPT_D2
SCRPT_D3
SCRPT_D4
SCRPT_D5
SCRPT_E1
SCRPT_E2
SCRPT_F1
SCRPT_F2
SPRPT_D1
SPRPT_D2
SPRPT_D3
SPRPT_D4
SPRPT_D5
SPRPT_E1
SPRPT_E2
SPRPT_F1
SPRPT_F2
Physical Functioning CARE_30D
CHC_6M
FCRPT_A1
FCRPT_A2
FCRPT_A3
FCRPT_A4
FCRPT_A5
FCRPT_A6
FCRPT_B1
FCRPT_B2
FCRPT_B3
FCRPT_B4
FCRPT_B5
FCRPT_B6
FPRPT_A1
FPRPT_A2
FPRPT_A3
FPRPT_A4
FPRPT_A5
FPRPT_A6
FPRPT_B1
FPRPT_B2
FPRPT_B3
FPRPT_B4
FPRPT_B5
FPRPT_B6
GCRPT_A1
GCRPT_A2
GCRPT_A3
GCRPT_A4
GCRPT_A5
GCRPT_A6
GCRPT_A7
GCRPT_A8
GPRPT_A1
GPRPT_A2
GPRPT_A3
GPRPT_A4
GPRPT_A5
GPRPT_A6
GPRPT_A7
GPRPT_A8
SICK_30D
School Functioning ABST_30D
ACCM_504
ACCM_IEP
ACCM_OSP
ACCM_OTH
ACCM_SES
ACCM_SPE
ACCMNONE
GCRPT_D1
GCRPT_D2
GCRPT_D3
GCRPT_D4
GCRPT_D5
GPRPT_D1
GPRPT_D2
GPRPT_D3
GPRPT_D4
GPRPT_D5
GRADE
RPGRADE
RPGRADE1
RPTIMES
Social Functioning GCRPT_C1
GCRPT_C2
GCRPT_C3
GCRPT_C4
GCRPT_C5
GPRPT_C1
GPRPT_C2
GPRPT_C3
GPRPT_C4
GPRPT_C5
SCRPT_H1
SCRPT_H2
SCRPT_H3
SCRPT_I1
SCRPT_I2
SCRPT_I3
SPRPT_H1
SPRPT_H2
SPRPT_H3
SPRPT_I1
SPRPT_I2
SPRPT_I3
Data ElementVariables
SCD Impact SCRPT_B1
SCRPT_B10
SCRPT_B2
SCRPT_B3
SCRPT_B4
SCRPT_B5
SCRPT_B6
SCRPT_B7
SCRPT_B8
SCRPT_B9
SPRPT_B1
SPRPT_B10
SPRPT_B2
SPRPT_B3
SPRPT_B4
SPRPT_B5
SPRPT_B6
SPRPT_B7
SPRPT_B8
SPRPT_B9
SCD Management SCRPT_A9
SCRPT_C1
SCRPT_C2
SPRPT_A9
SPRPT_C1
SPRPT_C2
Data ElementVariables
Blood Differential Test DIFFTYPE
LYMPH_PT
MONO_PT
NEUT_CT
NEUT_PT
Blood Gases
Blood Smear
Blood Typing SCDIAG
Coagulation Test
Complete Blood Count CWBC
CWBC
DIFFTYPE
FIRST_HEMGLOBIN
FIRST_MCV
FIRST_NEUTROPHIL_CNT
FIRST_NEUTROPHIL_NOT_DONE
FIRST_PLATELETS_CNT
FIRST_RBC
FIRST_RETIC_CNT
FIRST_RETIC_NOT_DONE
FIRST_WBC_ACOUNT
HB
HB
LAST_CBC_NOT_DONE
LAST_HEMGLOBIN
LAST_MCV
LAST_NEUTROPHIL_CNT
LAST_NEUTROPHIL_NOT_DONE
LAST_PLATELETS_CNT
LAST_RBC
LAST_RETIC_CNT
LAST_RETIC_NOT_DONE
LAST_WBC_ACOUNT
LYMPH_CT
LYMPH_PT
MCV
MCV
MONO_CT
MONO_PT
NEUT_CT
NEUT_PT
NRBC
NRBC
PCV
PCV
PLAT
PLAT
RBC
RBC
RETIC_CT
RETIC_CT
RETIC_PT
RETIC_PT
UNSCHVIS
WBC
WBC
Comprehensive Metabolic Panel (CMP) ALT
ALT_NOT_DONE
ALT_VALUE
BILI_NOT_DONE
BILI_VALUE
CRATININE_NOT_DONE
CRATININE_VALUE
CREATININE_NOT_DONE
CREATININE_VALUE
D_BILI
GGT_NOT_DONE
GGT_VALUE
T_BILI
Enzyme LDH
LDH_NOT_DONE
LDH_VALUE
General BLOOD_COLLECT
BLOOD_COLLECT_REASON
BLOODCOL
NOLAB_REASON_SP
NOVENACS
PRNTREFS
PTNTDCLN
Hemoglobin Electrophoresis DIAGHBSS
FETAL_HEMO_VAL
FETAL_NOT_DONE
HERPHFBL
Iron FERRISCAN_MRI
FERRISCAN_MRI_ND
FERRITIN_HIGH
IRONOVLD
LIVER_BX
LIVER_BX_ND
Data ElementVariables
Genitourinary Test
Urine Test REDCELLS
U_OSMO
URIN_PH
URINHB
URINOS
URINPR
URINSG
URN_NPO
WHTCELLS
Data ElementVariables
Neurologic NEUROBEH
NEUROCN
NEURODTR
NEUROFMC
NEUROGAIT
NEUROLANG
NEUROMOT
NEUROPSYCH_ABNORMAL
NEUROPSYCH_NOT_DONE
NEUROPSYCH_SP
Data ElementVariables
Eye exam EYE
OTHER_EYE
Data ElementVariables
Other OTHER_TEST
OTHER_TEST_DONE
Data ElementVariables
Abdomen ABDOMEN
Anthropometrics A12MHCND
A12MHTND
A12MO_HC
A12MO_HT
A12MO_WT
A12MWTND
A3MO_HC
A3MO_HT
A3MO_WT
A3MOHCND
A3MOHTND
A3MOWTND
A6MO_HC
A6MO_HT
A6MO_WT
A6MOHCND
A6MOHTND
A6MOWTND
A9MO_HC
A9MO_HT
A9MO_WT
A9MOHCND
A9MOHTND
A9MOWTND
FIRST_HEAD_CIRCUM
FIRST_HEAD_NOTDONE
FIRST_HEIGHT
FIRST_HEIGHT_NOT_DONE
FIRST_HEIGHT_NOTDONE
FIRST_WEIGHT
FIRST_WEIGHT_NOT_DONE
FIRST_WEIGHT_NOTDONE
GESTAGW
HAIR
HAIR
HAIR
HAIRHGHT
HAIRHGHT
HAIRHGHT
HANDED
HEADC
HEADC
HEADC
HEADC1
HEADCND
HEIGHT
HEIGHT
HEIGHT
HEIGHT
HEIGHT
HEIGHT
HEIGHT
HEIGHT1
HEIGHTND
HT_METHOD
HT_UNIT
LAST_ENCOUNTER_ND
LAST_HEAD_CIRCUM
LAST_HEAD_NOTDONE
LAST_HEIGHT
LAST_HEIGHT_NOTDONE
LAST_WEIGHT
LAST_WEIGHT_NOTDONE
LUNG_VOL2
LUNGV_TECH
NEWB_HC
NEWB_HT
NEWB_WT
NWBHC_ND
NWBHT_ND
NWBWT_ND
SECOND_ENCOUNTER_ND
SECOND_HEAD_CIRCUM
SECOND_HEAD_NOTDONE
SECOND_HEIGHT
SECOND_HEIGHT_ND
SECOND_WEIGHT
SECOND_WEIGHT_ND
WEIGHT
WEIGHT
WEIGHT
WEIGHT
WEIGHT
WEIGHT
WEIGHT
WEIGHT1
WEIGHTND
WT_UNIT
Cardiovascular CARDIAC
CARDIAC_OTHER
Extremities LGULCER
MSUL_ABN
MSULSKLTL
General APPEARANCE
NECK
NECK_NDLGST
NECK_RT
NOSE
OTHER_NOSE
OTHER_TONGUE
PHISICAL_EXAM
THROAT_EXUDATE
TONGUE
TONSIL
TONSIL_ENL
Liver LIVER
LIVRCM
LIVRCMBL
Reproductive F_BRSTS
F_P_HAIR
M_GNTLS
M_P_HAIR
Respiratory CHEST_CLEAR
CHEST_OTHER
CHEST_RETRACTIONS
CHEST_RONCHI
CHEST_SPECIFY
CHEST_TRANSAIRWAY
CHEST_WHEEZING
Spleen ANT_AXI_NOTDONE
ANTEROR_AXILLARY
ANTEROR_AXILLARY
MID_CLA_NOTDONE
MID_CLAVICULAR
MID_CLAVICULAR
SPLEEN
SPLEEN_PALPABLE
SPLNICND
SPLNINTC
SPLNINTC
SPLNMCND
SPLNMDCL
SPLNMDCL
Vital signs BP_DIASTOLIC
BP_DIASTOLIC_1
BP_METHOD
BP_SYSTOLIC
BP_SYSTOLIC_1
HEARTRATE
HEARTRATE
O2S_ND
O2SAT
O2SAT
O2SAT
O2SATND
PULSE
PULSEND
RESP
RESP
RESP
RESPND
TEMP
TEMPC
TEMPF
TEMPMEAS
TEMPND
THERM_PLACE
Data ElementVariables
Pulmonary Function Test BRONCH
BRONCH_SP
DLCO
DLCO_EFFORT
DLCO_EFFORT_SP
HEMOGLOBIN
LUNG_3MANEU
LUNG_VOL
MAX_SVC
MEAN_DLCO
MEAN_FRC
O2SAT
PFT_ABNORMAL
PFT_NOT_DONE
PFTS_ABNORMAL
PFTS_NOT_DONE
POST_EFFORT
POST_EFFORT_SP
POST_RATIO
POSTFEF25
POSTFEV1
POSTFVC
POSTPEFR
PRE_EFFORT
PRE_EFFORT_SP
PRE_RATIO
PREFEF25
PREFEV1
PREFVC
PREPEFR
RV
TLC
VA
Respiratory Test
Data ElementVariables
Antibiotics ANANT_SP
ANANTBTC
PAR_ANTI
PENCILN
PENDOSE
PENNA
Asthma
Blood Medication History
Cardiovascular
Compliance SCRPT_G1
SCRPT_G2
SCRPT_G3
SCRPT_G4
SCRPT_G5
SCRPT_G6
SCRPT_G7
SPRPT_G1
SPRPT_G2
SPRPT_G3
SPRPT_G4
SPRPT_G5
SPRPT_G6
SPRPT_G7
Current Medication
Depression Medication History
Hydroxyurea ANC_LOW
BELOW_BASLINE_PERC
CONCUR
CONTRAHU
DIFF_FRQ
DIFF_HU
DOSE_FORM
DOSE_SP2
DOSE_WEIGHT
FRGT_HU
HEMO_5_5GM_DL
HEMO_5GM_DL
HEMO_6GM_DL
HEMO_AMOUNT_SP
HEMO_AMOUNT2
HEMO_LOW_OTHER
HEMO_RETICULO
HEMOGLOBIN_LOW
HU
HU_DOSE_FORM
HU_DOSE_FORM2
HU_DOSE_WEIGHT
HU_DOSE_WEIGHT2
HU_INTERVAL_END
HU_PRESCRIBED
HU_TOXICITY
HU_TOXICITY_ASSESS4
HU_TOXICITY_SP
HU_TREAT_WEEKS
HU_TRVL
HUYSTRDY
LOW_ANC
LOW_HGB
LOW_PHS
MEDICATION
MEDICATION_SP
MISS_HU
OTHER_INFECTION
OTHER_TOXICITY_FTR
PCT_BELOW_BASELINE
PLATELET_LOW
PRVHUBL
RETICULOCYTE_NUM
SPLEEN_CHANGE
STPHU_1
STPHU_2
TREAT_DOSE1
TREAT_DOSE2
TXBOTNO
TXDDOSMG
TXDDOSMG
TXDDOSML
TXDDOSML
TXDOSEMG
TXDOSEML
TXOK
VOLDISP
Medication BUTYRATE
Neurologic Medication History
Pain
SCD Medication ANTISKBL
Sildenafil
Supplements
Data ElementVariables
Blood Transfusion EPISODIC_TRANS_RSN
EPISODIC_TRANSFUSION
TR_SP
TR_TYPE
TR_TYPE
TRANSFUS
TRN04_DT_DAYS
TRN2MO04
TRN2MO05
TRNRND21
TRNS_NA
TRNSFBL
TRVOLPR2
TRVOLPR2
TRVOLWBL
TSTOP_DT_DAYS
TSTRT_DT_DAYS
Chronic Transfusion CHRONIC_TRANS_REASON
CHRONIC_TRANS_SP
CHRONIC_TRANSFUSION
CHRTRAN
CHRTRFBL
EPISODIC_TRANS_SP
Transfusion Complications IRON_MED
IRONTHPY
PHYSICAL_EXAM
Data ElementVariables
Conditioning TPCON_DT_DAYS
Transplantation BMT
CURED_DT_DAYS
DEATH_DT_DAYS
GRAFT_TYPE
GRAFTREJ_DT_DAYS
MATCHING_DEGREE
OTHER
STABLE_DT_DAYS
TRANSPLANT
TRANSPLANT_DT_DAYS
TRANSPLANT_RSN
TRANSPLANT_RSN_SP
Data ElementVariables
Oxygen
Treatment IRRTRT
Data ElementVariables
Achenbach Child Behavior Checklist (CBCL)
Bayley Scale of Infant and Toddler Development ADJ_DAYS
ADJ_MO
BEHPCTL
BEHRAW
BRCHAGMN
BRCHAGYR
BRPMAGMN
BRPMAGYR
CARE40G
MEN95CIH
MEN95CIL
MENMDI
MENRAW
MLCHAGMN
MLCHAGYR
MLPMAGMN
MLPMAGYR
MOT95CIH
MOT95CIL
MOTPDI
MOTRAW
MRCHAGMN
MRCHAGYR
MRPMAGMN
MRPMAGYR
Behavior Rating Inventory of Executive Function (BRIEF)
California Verbal Learning Test
Children's Memory Scale
Connor's Continuous Performance Test II COMMI_G
COMMI_P
COMMI_T
COMMI_V
DETECT_G
DETECT_P
DETECT_T
DETECT_V
OMI_G
OMI_P
OMI_T
OMI_V
PERS_G
PERS_P
PERS_T
PERS_V
RESP_G
RESP_P
RESP_T
RESP_V
RT_G
RT_P
RT_T
RT_V
RTBCHG_G
RTBCHG_P
RTBCHG_T
RTBCHG_V
RTICHG_G
RTICHG_P
RTICHG_T
RTICHG_V
RTSE_G
RTSE_P
RTSE_T
RTSE_V
SEBCHG_G
SEBCHG_P
SEBCHG_T
SEBCHG_V
SEICHG_G
SEICHG_P
SEICHG_T
SEICHG_V
VARI_G
VARI_P
VARI_T
VARI_V
NeuroQOL Cognitive Function
Peabody Picture Vocabulary Test (PPVT)
Data ElementVariables
Adaptive Behavior Assessment System-II
Adverse Childhood Experience Questionnaire (ACE-Q)
Beery Developmental Test of Visual-Motor Integration
Benton Tactile Form Perception Test
Oral Verbal Fluency Test
Purdue Pegboard (SPA version)
Vineland Adaptive Behavior Summary CARE_OTHER
CARE41G
CDENDROW
CDSTROW
CHRAGEMN
CHRAGEYR
COM95CL
COMPCTL
COMRAW
COMSTRD
DDENDROW
DDSTROW
DLS95CL
DLSPCTL
DLSRAW
DLSSTRD
MSENDROW
MSSTROW
MTSK95CL
MTSKPCTL
MTSKRAW
MTSKSTRD
SDENDROW
SDSTROW
SOC95CL
SOCPCTL
SOCRAW
SOCSTRD
Wechsler Intelligence Scales AGE_MONTHS
AGE_YEARS
BD
BD_1
BD_10
BD_11
BD_12
BD_13
BD_14
BD_15
BD_16
BD_17
BD_18
BD_19
BD_2
BD_20
BD_3
BD_4
BD_5
BD_6
BD_7
BD_8
BD_9
BD_SCORE
CD
CMPHN_1
CMPHN_10
CMPHN_11
CMPHN_12
CMPHN_13
CMPHN_14
CMPHN_15
CMPHN_16
CMPHN_17
CMPHN_18
CMPHN_19
CMPHN_2
CMPHN_20
CMPHN_3
CMPHN_4
CMPHN_5
CMPHN_6
CMPHN_7
CMPHN_8
CMPHN_9
CMPHN_SCORE
CO
COD_SCORE
DS
FAIQ
FSIQ_COMP
FSIQ_CONFINT
FSIQ_CONFINT_HIGH
FSIQ_PERCENT
FSIQ_SCALED
GL_COMP
GL_CONFINT
GL_CONFINT_HIGH
GL_PERCENT
GL_SCALED
INFO_1
INFO_10
INFO_11
INFO_12
INFO_13
INFO_14
INFO_15
INFO_16
INFO_17
INFO_18
INFO_19
INFO_2
INFO_20
INFO_21
INFO_22
INFO_23
INFO_24
INFO_25
INFO_26
INFO_27
INFO_28
INFO_29
INFO_3
INFO_30
INFO_31
INFO_32
INFO_33
INFO_34
INFO_4
INFO_5
INFO_6
INFO_7
INFO_8
INFO_9
INFO_SCORE
LN
MR
MR_1
MR_10
MR_11
MR_12
MR_13
MR_14
MR_15
MR_16
MR_17
MR_18
MR_19
MR_2
MR_20
MR_21
MR_22
MR_23
MR_24
MR_25
MR_26
MR_27
MR_28
MR_29
MR_3
MR_4
MR_5
MR_6
MR_7
MR_8
MR_9
MR_SCORE
OA_1
OA_10
OA_11
OA_12
OA_13
OA_14
OA_2
OA_3
OA_4
OA_5
OA_6
OA_7
OA_8
OA_9
OA_SCORE
PC
PCOMP_1
PCOMP_10
PCOMP_11
PCOMP_12
PCOMP_13
PCOMP_14
PCOMP_15
PCOMP_16
PCOMP_17
PCOMP_18
PCOMP_19
PCOMP_2
PCOMP_20
PCOMP_21
PCOMP_22
PCOMP_23
PCOMP_24
PCOMP_25
PCOMP_26
PCOMP_27
PCOMP_28
PCOMP_29
PCOMP_3
PCOMP_30
PCOMP_31
PCOMP_32
PCOMP_4
PCOMP_5
PCOMP_6
PCOMP_7
PCOMP_8
PCOMP_9
PCOMP_SCORE
PCON_1
PCON_10
PCON_11
PCON_12
PCON_13
PCON_14
PCON_15
PCON_16
PCON_17
PCON_18
PCON_19
PCON_2
PCON_20
PCON_21
PCON_22
PCON_23
PCON_24
PCON_25
PCON_26
PCON_27
PCON_28
PCON_3
PCON_4
PCON_5
PCON_6
PCON_7
PCON_8
PCON_9
PCON_SCORE
PIQ_COMP
PIQ_CONFINT
PIQ_CONFINT_HIGH
PIQ_PERCENT
PIQ_SCALED
PN_1
PN_10
PN_11
PN_12
PN_13
PN_14
PN_15
PN_16
PN_17
PN_18
PN_19
PN_2
PN_20
PN_21
PN_22
PN_23
PN_24
PN_25
PN_26
PN_27
PN_28
PN_29
PN_3
PN_30
PN_4
PN_5
PN_6
PN_7
PN_8
PN_9
PN_SCORE
PRI
PS_COMP
PS_CONFINT
PS_CONFINT_HIGH
PS_PERCENT
PS_SCALED
PSI
RV_1
RV_10
RV_11
RV_12
RV_13
RV_14
RV_15
RV_16
RV_17
RV_18
RV_19
RV_2
RV_20
RV_21
RV_22
RV_23
RV_24
RV_25
RV_26
RV_27
RV_28
RV_29
RV_3
RV_30
RV_31
RV_32
RV_33
RV_34
RV_35
RV_36
RV_37
RV_38
RV_4
RV_5
RV_6
RV_7
RV_8
RV_9
RV_SCORE
SI
SIM_1
SIM_10
SIM_11
SIM_12
SIM_13
SIM_14
SIM_15
SIM_16
SIM_17
SIM_18
SIM_19
SIM_2
SIM_20
SIM_21
SIM_22
SIM_23
SIM_24
SIM_3
SIM_4
SIM_5
SIM_6
SIM_7
SIM_8
SIM_9
SIM_SCORE
SS
SS_SCORE
VC
VCI
VIQ_COMP
VIQ_CONFINT
VIQ_CONFINT_HIGH
VIQ_PERCENT
VIQ_SCALED
VOC_1
VOC_10
VOC_11
VOC_12
VOC_13
VOC_14
VOC_15
VOC_16
VOC_17
VOC_18
VOC_19
VOC_2
VOC_20
VOC_21
VOC_22
VOC_23
VOC_24
VOC_25
VOC_3
VOC_4
VOC_5
VOC_6
VOC_7
VOC_8
VOC_9
VOC_SCORE
WMI
WR_1
WR_10
WR_11
WR_12
WR_13
WR_14
WR_15
WR_16
WR_17
WR_18
WR_19
WR_2
WR_20
WR_21
WR_22
WR_23
WR_24
WR_25
WR_26
WR_27
WR_28
WR_3
WR_4
WR_5
WR_6
WR_7
WR_8
WR_9
WR_SCORE
Woodcock-Johnson Revised, Tests of Achievement
Woodcock-Johnson, Revised, Tests of Cognitive Ability
Data ElementVariables
Tanner Stage F_BRSTS
F_P_HAIR
M_GNTLS
M_P_HAIR
Data ElementVariables
Child Health Questionnaire (CHQ)
Ladder of Life
Pediatric Quality of Life Inventory Child Report (ages 13-18)
Pediatric Quality of Life Inventory Child Report (ages 8-12) FCRPT_A1
FCRPT_A2
FCRPT_A3
FCRPT_A4
FCRPT_A5
FCRPT_A6
FCRPT_B1
FCRPT_B2
FCRPT_B3
FCRPT_B4
FCRPT_B5
FCRPT_B6
FCRPT_C1
FCRPT_C2
FCRPT_C3
FCRPT_C4
FCRPT_C5
FCRPT_C6
GCRPT_A1
GCRPT_A2
GCRPT_A3
GCRPT_A4
GCRPT_A5
GCRPT_A6
GCRPT_A7
GCRPT_A8
GCRPT_B1
GCRPT_B2
GCRPT_B3
GCRPT_B4
GCRPT_B5
GCRPT_C1
GCRPT_C2
GCRPT_C3
GCRPT_C4
GCRPT_C5
GCRPT_D1
GCRPT_D2
GCRPT_D3
GCRPT_D4
GCRPT_D5
SCRPT_A1
SCRPT_A2
SCRPT_A3
SCRPT_A4
SCRPT_A5
SCRPT_A6
SCRPT_A7
SCRPT_A8
SCRPT_A9
SCRPT_B1
SCRPT_B10
SCRPT_B2
SCRPT_B3
SCRPT_B4
SCRPT_B5
SCRPT_B6
SCRPT_B7
SCRPT_B8
SCRPT_B9
SCRPT_C1
SCRPT_C2
SCRPT_D1
SCRPT_D2
SCRPT_D3
SCRPT_D4
SCRPT_D5
SCRPT_E1
SCRPT_E2
SCRPT_F1
SCRPT_F2
SCRPT_G1
SCRPT_G2
SCRPT_G3
SCRPT_G4
SCRPT_G5
SCRPT_G6
SCRPT_G7
SCRPT_H1
SCRPT_H2
SCRPT_H3
SCRPT_I1
SCRPT_I2
SCRPT_I3
Pediatric Quality of Life Inventory Parent Report for Child (ages 13-18)
Pediatric Quality of Life Inventory Parent Report for Child (ages 8-12) FPRPT_A1
FPRPT_A2
FPRPT_A3
FPRPT_A4
FPRPT_A5
FPRPT_A6
FPRPT_B1
FPRPT_B2
FPRPT_B3
FPRPT_B4
FPRPT_B5
FPRPT_B6
FPRPT_C1
FPRPT_C2
FPRPT_C3
FPRPT_C4
FPRPT_C5
FPRPT_C6
GPRPT_A1
GPRPT_A2
GPRPT_A3
GPRPT_A4
GPRPT_A5
GPRPT_A6
GPRPT_A7
GPRPT_A8
GPRPT_B1
GPRPT_B2
GPRPT_B3
GPRPT_B4
GPRPT_B5
GPRPT_C1
GPRPT_C2
GPRPT_C3
GPRPT_C4
GPRPT_C5
GPRPT_D1
GPRPT_D2