Metadata Catalog

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
Grant Number	N01-HB-07150 to N01-HB-07160

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, BioData Catalyst
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. Participants	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

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Clinical status (758)

Behavior (0)

Blood (4)

Data Element	Variables
Acute Anemic Episode
Aplastic Crisis	APLCR_NA APLCRBL
Bleeding
Other Blood Problem
Sickle Cell Disease	SCD_DIAG SCD_TYPE

Cancer (1)

Data Element	Variables
Cancer	MALIGBL

Cardiovascular (0)

Digestive (2)

Data Element	Variables
Gastrointestinal Problem	CONST SOILY_UW
Hepatitis
Liver Problem

Endocrine (0)

Family MedHx (3)

Data Element	Variables
Family MedHx	FM_SCD SIB_ENR WTBD_FM

General Health (7)

Data Element	Variables
General Health	CHC_NAME GROW_STP2 ILLNESS OVERWGHT2 PICA_1 PICA_2 PICA_OBS

Genitourinary (35)

Data Element	Variables
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

Immune (67)

Data Element	Variables
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

Lymphatic (11)

Data Element	Variables
Sarcoidosis
Spleen Problem	DIAG_SPLENIC_SEQU SPLENECTOMY_ND SPLNHMGL SPLNHMGL SPLNSIZE SPLNSIZE_DURING SPLNSIZE_PRIOR SPLPTCNT SPLPTCNT SPLSEQBL SPLSEQNA

Medical Event (37)

Data Element	Variables
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

Medical History (0)

Mental Health (0)

Musculoskeletal (2)

Data Element	Variables
Musculoskeletal Problem
Osteomyelitis	OSTEOMBL OSTEOMNA
Osteonecrosis
Rheumatic Diseases

Neurodevelopmental (526)

Data Element	Variables
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

Neurologic (20)

Data Element	Variables
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

Nutritional and Metabolic (0)

Ocular (0)

Oral (0)

Pain (8)

Data Element	Variables
Abdominal Pain
General Pain	PAIN_EPISODES PAIN2
Headache
Management
Pain Attack	PAINBL PAINBLNA
Skeletal and Joint Pain	AGEDACNA AGEDACT DACTBL DACTBLNA

Reproductive (0)

Respiratory (10)

Data Element	Variables
Acute Chest Syndrome	ACSMVENT ACSMVENT ACSNINF ACSNINF ACSOXADM ACSOXADM ACSSRAP ACSSRAP ASCBL ASCBL_NA
Asthma
Lung Disease
Other Respiratory Problem

Skin (0)

Sleep (16)

Data Element	Variables
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

Surgery History (9)

Data Element	Variables
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

COVID-19 (0)

Diagnosis (0)

Impact (0)

Treatment (0)

Vaccination (0)

Demographics (33)

Demographics (23)

Data Element	Variables
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

Social Determinants of Health (SDoH) (1)

Data Element	Variables
Community	ROOMS
Individual

Socioeconomic Status (9)

Data Element	Variables
Annual Income	FAMINCOMG
Education
Employment Status
Household	ADULT CHLDN
Insurance	AMNGCARE MEDICAID MEDICARE NOINSRNC PRIVTINS STATEPRG
Marital Status

Environmental Exposure (0)

Exposure (0)

Health Care (45)

Acute Care Utilization (36)

Data Element	Variables
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

Healthcare utilization (0)

Health Services (0)

Hospitalization (9)

Data Element	Variables
Final Diagnosis	ER_RSN OVNT_RSN
Hospitalization	HOSPTLZD HOSPITAL_TIMES HOSPBL HOSP_NA LONGHOSP N_EVTS
ICU	ICU

SCD Management (0)

Imaging (237)

Angiogram (1)

Data Element	Variables
Angiogram	F50ARTGR

Catheterization (0)

CT Scan (3)

Data Element	Variables
Abdomen
Bone
Brain	CT_ABNORMAL CT_NOT_DONE F50CTBR
Chest

Echocardiogram (3)

Data Element	Variables
Echocardiogram	CARDIAC_ABNORMAL CARDIAC_NOT_DONE CARDIAC_UNKNOWN

Electrocardiogram (ECG) (18)

Data Element	Variables
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

Electrodiagnosis (2)

Data Element	Variables
Electroencephalogram	EEG_ABNORMAL EEG_NOT_DONE

General Imaging (0)

MRI/MRA (79)

Data Element	Variables
Brain	OTHLESN ORBASIL ORLACA ORLICA ORLMCA ORMRA ORRACA ORRICA ORRMCA MRA_ABNORMAL MRA_NOT_DONE MRA_UNKNOWN MRI_NOT_DONE 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 MRI_RESULTS MRI_RESULTS MRI_RESULTS_SP MRI_UNKNOWN MRIMRA_EQPT MRIMRA_QUALITY LSNA_LC1 LSNA_SID LSNA_SIZ LSNA_TYP LSSBASIL LSSLACA LSSLICA LSSLMCA LSSMRA LSSRACA LSSRICA LSSRMCA INVSEG1 INVSEG2 INVSEG3 INVSEG4 INVSEGL1 INVSEGL2 INVSEGL3 INVSEGL4 INVSEGR1 INVSEGR2 INVSEGR3 INVSEGR4 FOCAL_SP FINDINGS F50MRA F50MRI ATR_FOCL ATR_GENL ATR_SEV ATRFSULC ATRFVENT ATRGSULC ATRGVENT ATROPHY BLDVSLS BONY_CHG ABLACA ABLICA ABLMCA ABMRA ABRACA ABRICA ABRMCA
Heart
Hip
Liver

Nuclear Medicine Imaging (70)

Data Element	Variables
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	LIVSP_ABNORMAL LIVSP_NOT_DONE LIVSP_UNKNOWN KALIVCNT KALIVPIX KALIVTOT KPLIVCNT KPLIVPIX KPLIVTOT 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

PET scan (1)

Data Element	Variables
Brain	F50PTBR

Transcranial Doppler (TCD) (15)

Data Element	Variables
Brain	F50TCD FM13_ND COMPEXAM INCEX_SP INCEXAM POS_SP PTNTPOS TCD_IMAGE_RESULTS TCD_IMAGE_YN TCD_NUM TCD1 TCD1_RESULT TCD2 TCD3 TCD4

Ultrasound (45)

Data Element	Variables
Abdomen	F80III2F F80III5A LKECEX85 LKECHO85 LKID85 LKRPAR85 LKRPEX85 LKVOL85 LVRENL85 RKECEX85 RKECHO85 RKIDN85 RKRPAR85 RKRPEX85 RKVOL85 ACCSPL85 ABD_ABNORMAL ABD_NOT_DONE ABD_NPO ABD_UNKNOWN ABDABN85 ABDSEQPT ABDSTRNS SPLANP85 SPLCLN85 SPLEEN85 SPLHOM85 SPLTRN85 SPLVLCAL SPLVOL85 SPLVOLND STATUS45
Gallbladder	GALBLA85 GBCBD85 GBCDV85 GBIHEP85 GBLGST85 GBLGSTNA GBMSTN85 GBNSTN85 GBPAND85 GBPRFL85 GBSFM85 GBSLDG85 GBWALL85
Penis

X-Ray (0)

Parent/Caretaker (37)

Demographics (26)

Data Element	Variables
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

Psychosocial (7)

Data Element	Variables
Psychosocial
Relationship	CARE_OTHER CARE40G CARE41G OTHCRTKRG PRCARTKRG RLTN_SP RLTNSHP

Quality of Life (4)

Data Element	Variables
Quality of Life	CONC_WK MSWK_30D RTN_WK WKOTSDHM

Quality of Life (175)

General Health (0)

Pain (16)

Data Element	Variables
Pain	SPRPT_A1 SPRPT_A2 SPRPT_A3 SPRPT_A4 SPRPT_A5 SPRPT_A6 SPRPT_A7 SPRPT_A8 SCRPT_A1 SCRPT_A2 SCRPT_A3 SCRPT_A4 SCRPT_A5 SCRPT_A6 SCRPT_A7 SCRPT_A8

Patient Functioning (133)

Data Element	Variables
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

SCD (26)

Data Element	Variables
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

Tests (301)

Biopsy (0)

Blood (87)

Data Element	Variables
Blood Differential Test	DIFFTYPE LYMPH_PT MONO_PT NEUT_CT NEUT_PT
Blood Gases
Blood Smear
Blood Typing
Coagulation Test
Complete Blood Count	CWBC CWBC DIFFTYPE FETAL_HEMO_VAL FETAL_NOT_DONE 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 Typing	DIAGHBSS HERPHFBL SBTHALBL SCDIAG
Iron	FERRISCAN_MRI FERRISCAN_MRI_ND FERRITIN_HIGH IRONOVLD LIVER_BX LIVER_BX_ND

Cardiovascular (0)

Genitourinary (9)

Data Element	Variables
Genitourinary Test
Urine Test	REDCELLS U_OSMO URIN_PH URINHB URINOS URINPR URINSG URN_NPO WHTCELLS

Immune (0)

Microbiology Culture (0)

Musculoskeletal (0)

Neurologic (10)

Data Element	Variables
Neurologic	NEUROBEH NEUROCN NEURODTR NEUROFMC NEUROGAIT NEUROLANG NEUROMOT NEUROPSYCH_ABNORMAL NEUROPSYCH_NOT_DONE NEUROPSYCH_SP

Ocular (2)

Data Element	Variables
Eye exam	EYE OTHER_EYE

Other (2)

Data Element	Variables
Other	OTHER_TEST OTHER_TEST_DONE

Physical Exam (158)

Data Element	Variables
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 THROAT_EXUDATE TONGUE TONSIL TONSIL_ENL NECK NECK_NDLGST NECK_RT PHISICAL_EXAM OTHER_NOSE OTHER_TONGUE NOSE
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 SPLEEN SPLEEN_PALPABLE SPLNICND SPLNINTC SPLNINTC SPLNMCND SPLNMDCL SPLNMDCL MID_CLA_NOTDONE MID_CLAVICULAR MID_CLAVICULAR
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

Reproductive (0)

Respiratory (33)

Data Element	Variables
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

Therapeutics (119)

Medication (79)

Data Element	Variables
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

Surgery (0)

Transfusion (26)

Data Element	Variables
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

Transplantation (13)

Data Element	Variables
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

Treatment (1)

Data Element	Variables
Discontinuation
Oxygen
Treatment	IRRTRT

Study Publications

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Mental Health (0)

Neurodevelopment (73)

Data Element	Variables
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
Delis-Kaplan Executive Function System (D-KEFS)
NeuroQOL Cognitive Function
Peabody Picture Vocabulary Test (PPVT)

Neuropsychological (406)

Data Element	Variables
Adaptive Behavior Assessment System-II
Adverse Childhood Experience Questionnaire (ACE-Q)
Beery Developmental Test of Visual-Motor Integration
Benton Tactile Form Perception Test
Mini Mental Status Examination (MMSE)
Oral Verbal Fluency Test
PROMIS Cognitive Function
Purdue Pegboard (SPA version)
Test of Everyday Attention (TEA)
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
Wechsler Memory Scale
Wisconsin Card Sorting Test
Woodcock-Johnson Revised, Tests of Achievement
Woodcock-Johnson, Revised, Tests of Cognitive Ability

Pain (0)

Psychosocial (0)

Physical Function (4)

Data Element	Variables
6-Minute Walk Test
PROMIS Physical Functioning
Tanner Stage	F_BRSTS F_P_HAIR M_GNTLS M_P_HAIR

Quality of Care (0)

Quality of Life (168)

Data Element	Variables
ASCQ-Me SCD Medical History Checklist
ASCQ-Me Sexual Health
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 GPRPT_D3 GPRPT_D4 GPRPT_D5 SPRPT_A1 SPRPT_A2 SPRPT_A3 SPRPT_A4 SPRPT_A5 SPRPT_A6 SPRPT_A7 SPRPT_A8 SPRPT_A9 SPRPT_B1 SPRPT_B10 SPRPT_B2 SPRPT_B3 SPRPT_B4 SPRPT_B5 SPRPT_B6 SPRPT_B7 SPRPT_B8 SPRPT_B9 SPRPT_C1 SPRPT_C2 SPRPT_D1 SPRPT_D2 SPRPT_D3 SPRPT_D4 SPRPT_D5 SPRPT_E1 SPRPT_E2 SPRPT_F1 SPRPT_F2 SPRPT_G1 SPRPT_G2 SPRPT_G3 SPRPT_G4 SPRPT_G5 SPRPT_G6 SPRPT_G7 SPRPT_H1 SPRPT_H2 SPRPT_H3 SPRPT_I1 SPRPT_I2 SPRPT_I3
PROMIS Global Health
PROMIS Global Physical Health
PROMIS Self-Efficacy for Managing Medications and Treatment
SF-36 Health Survey

Sleep (0)

Technology Support (0)

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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

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