Details - CureSickleCell

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Clinical status (632)

Behavior (0)

Blood (22)

Data Element	Variables
Acute Anemic Episode	A_ANEMIA A_ANEMIA
Aplastic Crisis	APLA_NUM APLAS_C1 aplas_d1frmrand aplast_dfrmrand aplast_dfrmrand APLASTIC APLASTIC APLASTIC APLASTIC APLASTTL APLASTTL APLSEEN1 SEENAPLS SEENAPLS SEENAPLS TREATAPL TREATAPL
Bleeding
Other Blood Problem
Sickle Cell Disease	HB_DIAG SCD_DIAG SCD_TYPE

Cancer (2)

Data Element	Variables
Cancer	CANCER CANCER

Cardiovascular (4)

Data Element	Variables
Aneurysm
Cardiac Failure
Cardiovascular Problem
Heart Problem	CHD CHD CHD CHD_TYPE

Digestive (12)

Data Element	Variables
Gastrointestinal Problem
Hepatitis	HEP_B HEP_C
Liver Problem	C_LVRTYP CHR_LVRD CHRLIVER CHRLIVER FERRITIN FERRITIN FERRITIN IRON_OL IRONOVER IRONOVER

Endocrine (3)

Data Element	Variables
Diabetes Mellitus	DIABETES DIABETES DIABETES
Endocrine Problem

Family MedHx (5)

Data Element	Variables
Family MedHx	ANY_SIBS STR_BROT STR_FATH STR_MOTH STR_SIST

General Health (0)

Genitourinary (27)

Data Element	Variables
Genitourinary Problem
Kidney Problem	C_RNLTYP CHR_RNLD CHRRENAL CHRRENAL
Priapism	A_PRIAPISM A_PRIAPISM PRIA_NUM PRIAP PRIAP PRIAP_C1 priap_d1frmrand priap_dtfrmrand priap_dtfrmrand PRIAPISM PRIAPISM PRIAPISM PRIAPISM PRIAPSM PRIAPTTL PRIAPTTL PRISEEN1 SEENPRIA SEENPRIA SEENPRIA TREATPRI TREATPRI
Renal Dialysis History	DIALYSIS

Immune (55)

Data Element	Variables
Fever	A_FEBRIL A_FEBRIL DIF_SPEK FEVER FEVER FEVER FEVER_C1 FEVER_C2 FEVER_C3 FEVER_C4 fever_d1frmrand fever_d2frmrand fever_d3frmrand fever_d4frmrand fever_dtfrmrand fever_dtfrmrand FEVERTTL FEVERTTL FEVR_NUM FEVSEEN1 FEVSEEN2 FEVSEEN3 FEVSEEN4 SEENFEVR SEENFEVR TREATFEV TREATFEV
HIV Infection
Immune Problem
Infection	BACTERI INFECTI OTH_INF SEENSEPT SEENSEPT SEENSEPT SEPSEEN1 SEPSEEN2 SEPT_NUM SEPT_TTL SEPT_TTL SEPTC_C1 SEPTC_C2 septc_d1frmrand septc_d2frmrand septi_dtfrmrand SEPTICEM SEPTICEM SEPTICEM SEPTICEM TREATSEP TREATSEP VIRAL
Vaccination	HEPBVACC HEPBVACC HEPBVACC vacc_dtfrmrand vacc_dtfrmrand

Lymphatic (14)

Data Element	Variables
Sarcoidosis
Spleen Problem	SEENSPLN SEENSPLN splen_dtfrmrand SPLENECT SPLENICS SPLENICS SPLENICS SPLENSEQ SPLENTTL SPLN_NUM spls_d1frmrand SPLSEEN1 SPLSEQC1 TREATSPL

Medical Event (78)

Data Element	Variables
Adverse event	CONT_EVT ev_recode2 ev_recode3 ev_recodenm1 ev_recodenm2 qtrrptfrmrand qtrrptfrmrand SAME_EVT septi_dtfrmrand surg_dtfrmrand transf_dfrmrand vaso_dtfrmrand
Death	admit_dtfrmrand AUTOPSY CAUSCLAS CAUSSPEC CAUSTYPE DEATH_TM DIAGNOS1 DIE_EVNT DTH_CERT IMFAMILY INFO_OTH MED_PERS MED_RECS PT_DIE PT_DIE PT_DIE
Disability Status	DISAB_S
Hospitalization	adm_datefrmrand adm_datfrmrand ADM_REA ADMITTED dis_datefrmrand dis_datfrmrand hospadmtfrmrand hospdiscfrmrand PT_DISC PT_HOSP PT_HOSP REASON
Medical Event	EXPRSPEC O_EVENTS O_EVENTS o_recode1 o_recode1 o_recode2 o_recode2 oth_evdtfrmrand oth_evdtfrmrand OTH_EVNT OTH_EVNT OTH_EXPR OTH_EXPR oth_recodespc1 oth_recodespc1 oth_recodespc2 oth_recodespc2 OTH_TTL OTH_TTL OTHER OTHER_C1 OTHER_C2 OTHER_C3 other_d1frmrand other_d2frmrand other_d3frmrand OTHEVENT OTHR_NUM OTHSEEN1 OTHSEEN2 OTHSEEN3 SEENOTH SEENOTH TREATOTH TREATOTH
Serious Adverse Event	DAYSVENT VENTILAT

Medical History (3)

Data Element	Variables
Medical History	OTHCOND OTHCOND OTHCOND

Mental Health (2)

Data Element	Variables
Anxiety
Depression
Emotional Health
Mental status	CHG_MENT CHG_MENT
Psychiatric Disorder

Musculoskeletal (25)

Data Element	Variables
Musculoskeletal Problem	LEGULCER LULCERS LULCERS
Osteomyelitis	OSTE_NUM OSTEO_C1 osteo_d1frmrand osteo_dtfrmrand OSTEOMYE OSTEOMYL OSTEOMYL OSTEOMYL OSTEOTTL OSTSEEN1 SEENOSTE SEENOSTE TREATOST
Osteonecrosis	A_NECROS A_NECROS ANECROS NECR_LOC NECROSPC NECROSPC
Rheumatic Diseases	RHEU_FVR RHEUMATC RHEUMATC

Neurodevelopmental (167)

Data Element	Variables
Behavior	BEHAVIOR BEHAVIOR
Cognition	COMPAPPR COMPRTTL CONCIOS CONFRTTL CONS_ABN DIF_UNDS DIFFUNDR DRAWAPPR DRAWTTL expres_dfrmrand EXPRESS HEAD_INJ HEAD_INJ LANG_SPC LANGFUNC LEV_CONS NAMEAPPR ORIENAPP ORIENTTL rbcant_dfrmrand READAPPR READTTL REPITAPP REPITTTL slur_dtfrmrand SLURRING WRITAPPR WRITETTL
Developmental
Motor	ABN_MOVE ANKLE_LT ANKLE_RT ATAXLARM ATAXLLEG ATAXRARM ATAXRLEG BALANC_L BALANC_R BICEP_LT BICEP_RT BRACH_LT BRACH_RT CLUMSINS COORDINA COORDINA COORDINL COORDINR DIZZINES DIZZINES GAIT HANDCHNG HOPLFOOT HOPRFOOT INVOLMOV KNEE_LT KNEE_RT LARMDIST LARMPROX LLEGDIST LLEGPROX MOVE_SPC MOVELARM MOVELLEG MOVERARM MOVERLEG MOVLFACE MOVRFACE ONHEELS PLANTR_L PLANTR_R RARMDIST RARMPROX RLEGDIST RLEGPROX TIPTOES TRICEP_L TRICEP_R WCHFOOT WHATFOOT WHCHHAND
Sensation	ARMLEFT ARMRIGHT CORNEAL DYSARTHR FACELEFT FACERIGT FACIAL_S GAG GAZE HEARING LARMPINP LARMPROP LARMTOUC LARMVIB LEGLEFT LEGRIGHT LFACE_T LFACEPIN LL_FACE LLEGPINP LLEGPROP LLEGTOUC LLEGVIB LTRUNK_T LTRUNKPP LU_FACE mlarm_dtfrmrand mlleg_dtfrmrand mrarm_dtfrmrand mrleg_dtfrmrand nlarm_dtfrmrand nlface_dfrmrand nlleg_dtfrmrand nrarm_dtfrmrand nrleg_dtfrmrand NUMBLARM NUMBLLEG NUMBNESS NUMBRARM NUMBRLEG NUMLFACE NUMRFACE OCULARMV PALATELV PAPILLED PUPILS RARMPINP RARMPROP RARMTOUC RARMVIB RFACE_T RFACEPIN RL_FACE RLEGPINP RLEGPROP RLEGTOUC RLEGVIB RTRUNK_T RTRUNKPP RU_FACE SENS_DIS SENSDIST SENSDIST SENSSIDE TONELARM TONELLEG TONERARM TONERLEG TONGUE_S TRAPEZIS VISUAL_C WEAKLARM WEAKLFACE WEAKLLEG WEAKNESS WEAKNESS WEAKNESS WEAKRARM WEAKRFACE WEAKRLEG WEAKSIDE WEAKSIDE wlarm_dtfrmrand wlleg_dtfrmrand wrarm_dtfrmrand wrleg_dtfrmrand

Neurologic (99)

Data Element	Variables
Meningitis	MENINGIT MENINGIT MENINGIT MENINGIT SEENMENI
Neurologic Event	ARM_LT ARM_RT BRAINED ct_datefrmrand DIF_SPEK DIZZINESS dizzy_dtfrmrand DIZZY_EP DSWALLOW DSWALLOW EV_TYPE EV_TYPE EV_TYPE EV_TYPE FACE_LT FACE_RT HEADINJR HEADINJR HEMIPARE hospadmtfrmrand hospdiscfrmrand image_dtfrmrand INTERVIE INTERVIE INTERVIE INTR_HEM INV_REV LEG_LT LEG_RT loss_dtfrmrand LOSSCONS LOSSCONS LOSSCONS LOSSEPIS mra_datefrmrand mri_datefrmrand neuro_dtfrmrand NEWNEURO NEWNEURO NEWREPRT ONSET_AP onset_dtfrmrand qtr_datefrmrand qtr_datefrmrand qtrrpt2frmrand SIGNEURO SPEECH SYM_BEFR SYM_LAST SYMPRPTD SYMPRPTD tcd_datefrmrand TYPESPEC TYPESPEC WITNES_E WITNES_E WITNES_E
Seizure	POS_SEIZ SEIZURE SEIZURE SEIZURE SEIZURES SEIZURES SEIZURES
Stroke	NCSN_SP NEWSTROK NEWSTROK NSTRK_SP NSTRKDX NSTRKDX OT2_MTHS OTHER_SP SEENSTRK STROK_C1 strok_d1frmrand strok_dtfrmrand STROK1 STROK1 STROK2 STROK2 STROK3 STROKE STROKE STROKE STROKNUM STROKRE STROKTTL STRSEEN1 TREATSTR
Transient Ischemic Attack	TIA TIA_C1 tia_dt1frmrand TIA_NUM TIASEEN1

Nutritional and Metabolic (0)

Ocular (9)

Data Element	Variables
Ocular Problem	D_VISION D_VISION D_VISION VIS_LOSS VIS_SIDE VISION_L
Sickle Retinopathy	SC_RETIN SC_RETIN SC_RETIN

Oral (0)

Pain (42)

Data Element	Variables
Abdominal Pain
General Pain
Headache	HEAD_LOC HEAD_LOC HEAD_MTH HEAD_SPEC HEADACHE HEADACHE HEADACHE HEADACHE HEADFREQ
Management	PAINHOSP
Pain Attack	PAIN_CRI PAINFUL PAINFUL SEENVASO SEENVASO TREATVAS TREATVAS vaso_dtfrmrand VASO_NUM VASO_TTL VASO_TTL VASOP_C1 VASOP_C2 VASOP_C3 vasop_d1frmrand vasop_d2frmrand vasop_d3frmrand VASOPAIN VASOPAIN VASOPAIN VASOSEN1 VASOSEN2 VASOSEN3
Skeletal and Joint Pain	H_F_SYND H_F_SYND H_F_SYND HF_SYND hfs_datefrmrand HFS_TTL SEENHFS SEENHFS TREATHFS

Reproductive (0)

Respiratory (28)

Data Element	Variables
Acute Chest Syndrome	A_CHEST A_CHEST ACS PNEU_NUM pneum_dtfrmrand pneum_dtfrmrand PNEUMONA PNEUMONI PNEUMONI PNEUMTTL PNEUMTTL PNEUSEN1 PNUEM_C1 pnuem_d1frmrand SEENPNEU SEENPNEU TREATPNE TREATPNE
Asthma	ASTHMA ASTHMA ASTHMA
Lung Disease	CHR_LUNG CHR_LUNG CHR_LUNG LUNGTYPE TUBERCUL TUBERCUL TUBERCUL
Other Respiratory Problem

Skin (0)

Sleep (0)

Surgery History (35)

Data Element	Variables
Cardiovascular	PORTACTH PORTCATH
Digestive
Genitourinary
Lymphatic	surg_recodesp2 surg_recodespc surgrecode surgrecode2
Musculoskeletal
Ocular
Respiratory
Surgery History	ANESTHES ANESTHES othspec1_recode othspec2_recode othspec3_recode SEENSURG SEENSURG surg_d1frmrand surg_d2frmrand surg_d3frmrand surg_dtfrmrand SURG_NUM surg_recodesp2 surg_recodespc SURG_TTL SURG_TTL SURGERY SURGERY SURGERY surgery1_recode surgery2_recode surgery3_recode SURGPERF SURGPERF surgrecode surgrecode2 SURGSEN1 SURGSEN2 SURGSEN3

Demographics (4)

Data Element	Variables
Address
Age	PT_AGE
Ethnic Group
Gender	GENDER GENDER
Language
National Origin
Nuclear Family
Race	NEW_RACE

Social Determinants of Health (SDoH) (0)

Socioeconomic Status (0)

Environmental Exposure (3)

Exposure (3)

Data Element	Variables
Exposure
Lead Poisoning	ELEV_BLD ELEV_BLD ELEVLEAD

Health Care (2)

Acute Care Utilization (2)

Data Element	Variables
Facility Type	WHERSEEN WHERSEEN
Provider Type
Quality of Care
Visit

Healthcare utilization (0)

Health Services (0)

Hospitalization (0)

SCD Management (0)

Imaging (294)

Angiogram (2)

Data Element	Variables
Angiogram	ARTERIOG ARTERIOG

CT Scan (57)

Data Element	Variables
Abdomen
Bone
Brain	ACCEPTAB ATROPHYF ATROPHYJ brainste BSTAT_F capsular capsular_side cerebell cerebell_side COMMENT1 COMMENT2 cortex cortwhit CT_BRAIN CT_BRAIN basalgan basalgan_side ENCL_SPC F_SULCALF F_VENTRF FILM_REV FOCALF frontal frontal_side G_SEVF G_SULCALF GENERALF INTRAHEM les_chngfrbase les_num les_tot lesion lesions G_VENTRF INTHEMOR INTHEMOR SCANENCL SCANQUAL SIDE_F LOC1_F LOC2_F LOC3_F LOC4_F MRI_PERF occipita occipita_side parietal parietal_side OTH_REAS PI_REV PSTAT_F read_dtfrmrand SIZE_F temporal temporal_side TYPE_F whitemat
Chest

Echocardiogram (0)

Electrocardiogram (ECG) (0)

Electrodiagnosis (0)

General Imaging (3)

Data Element	Variables
General Imaging	O_IMAGE O_IMAGE OTHIMAGE

MRI/MRA (116)

Data Element	Variables
Brain	UNSEGMAV VASC_BAS VASC_PRE SOURCEAV SPATRESA SPATRESB STUDY_OK TARGETAV read_dtfrmrand REAS_MRA r_datefrmrand RACA RACABASE prev_dtfrmrand RACAPREV RACARATE neuro_dtfrmrand NOK_REAS mra_datefrmrand MRABRAIN MRABRAIN mri_datefrmrand MRI_PERF MRIBRAIN MRIBRAIN LPCA LPCABASE LPCAPREV LPCARATE MANUFACT LPCOABAS LPCOAPRV LPCOARAT SCANQUAL SCANQUAL RPCAPREV RPCARATE RPCOABAS RPCOAPRV RPCOARAT REASON_P RECTFVA RECTFVB RHROBBAS RHROBPRV RHROBRAT RIC_SUPR RICABASE RICAPREV RICARATE RICCAVER REAS_SPC RMCA RMCABASE RMCAPREV RMCARATE RPCA RPCABASE GENERAL LMCA LMCABASE LMCAPREV LMCARATE LHROBBAS LHROBPRV LHROBRAT LIC_SUPR LICABASE LICAPREV LICARATE LICCAVER LACA LACABASE LACAPREV LACARATE GSTAT_B GSTAT_P G_VENTR G_SULCAL FSTAT_B FSTAT_P G_SEV FOCALSPC FOV FOCAL FILMS_OK F_VENTR ECHOTIME F_SULCAL event_dtfrmrand event_dtfrmrand dprevscn_frmrand DWI_FILM DWI_PER DWI_PERF DWI_PERF dbasescn_frmrand ct_datefrmrand COMPPREV COMPREV BLD_VESS BONT_SPC BONY_BAS BONY_PRE BONYCHNG BAD_FILM BADFSPEC basel_dtfrmrand BASILAR BASLBASE BASLPREV BASLRATE ACCEPTAB AD_REASN ADEQUATE ATROPHY
Heart
Hip
Liver

Nuclear Medicine Imaging (0)

PET scan (2)

Data Element	Variables
Brain	PETBRAIN PETBRAIN

Transcranial Doppler (TCD) (114)

Data Element	Variables
Brain	NEWVISIT RACARI RACAVD RACAVM RACAVS RBIFD RBIFPI RBIFRI RBIFVD RBIFVM RBIFVS RDICAD RDICAPI RDICARI RDICAVD RDICAVM RDICAVS preaddte_frmrand OTHER1 RACAD RACAPI REAS_NOT LTOBD LTOBPI LTOBRI LTOBVD LTOBVM LTOBVS maxvel maxvell maxvelr LPCARI LPCAVD LPCAVM LPCAVS LPCAD LPCAPI RPCAD RPCAPI RMCARI RMCAVD RMCAVM RMCAVS RMCAD RMCAPI REASMIS1 REASMIS2 REASMIS3 RM1D RM1PI RM1RI RM1VD RM1VM RM1VS RTOBD RTOBPI RTOBRI RTOBVD RTOBVM RTOBVS RPCARI RPCAVD RPCAVM RPCAVS FNAME HEAD_DI daterand_dfrmrand dumpdt_frmrand BASD eventdt_frmrand EXAM_INTP EXAM_RSN examdt_frmrand exdated_frmrand EXNOTRPT LACARI LACAVD LACAVM LACAVS LBIFD LBIFPI LBIFRI LBIFVD LBIFVM LBIFVS LDICAD LDICAPI LDICARI LDICAVD LDICAVM LDICAVS LACAD LACAPI LM1D LM1PI LM1RI LM1VD LM1VM LM1VS LMCARI LMCAVD LMCAVM LMCAVS LMCAD LMCAPI BASPI BASRI BASVD BASVM BASVS TCDSCHED sreaddte_frmrand TRANSDOP TRANSDOP

Ultrasound (0)

X-Ray (0)

Parent/Caretaker (0)

Demographics (0)

Psychosocial (0)

Quality of Life (0)

General Health (0)

Pain (0)

Patient Functioning (0)

SCD (0)

Tests (279)

Biopsy (1)

Data Element	Variables
Biopsy	LIVER_BX

Blood (198)

Data Element	Variables
Blood Differential Test	BANDS BASO EOSINO LYMPHOCY MONO OTH_WBC RET_CNT RETICULO WBC_PMN
Blood Gases
Blood Smear
Blood Typing	A_DIR_H A_IND_H ANTI_C ANTI_C ANTI_C ANTI_C2 ANTI_D ANTI_D ANTI_D ANTI_E ANTI_E ANTI_E ANTI_E2 ANTI_F2 ANTI_FC ANTI_FY ANTI_FYA ANTI_FYA ANTI_FYB ANTI_FYB ANTI_I ANTI_I ANTI_JB ANTI_JD ANTI_JK ANTI_JKA ANTI_JKB ANTI_JKB ANTI_JS ANTI_JSA ANTI_JSB ANTI_K ANTI_K ANTI_K2 ANTI_KA ANTI_KEL ANTI_KP ANTI_KPA ANTI_KPB ANTI_LE ANTI_LEA ANTI_LEA ANTI_LEB ANTI_LEB ANTI_LF ANTI_M ANTI_M ANTI_M ANTI_N ANTI_N ANTI_OT ANTI_OTH ANTI_OTH ANTI_P1 ANTI_P1 ANTI_S ANTI_S ANTI_S ANTI_S2 ANTI_U ANTI_V ANTI_V ANTIB_C ANTIB_E ANTIB_F ANTIB_K ANTIB_S ANTIB_U ANTIG_AP ANTISPE BLOODGRP COOMBS DIRECT DIRECT_A DUF_FYA DUF_FYB INDIR_A INDIREC KELL_JSA KELL_JSB KELL_K KELL_KEL KELL_KPA KELL_KPB KID_JKA KID_JKB LEW_LEA LEW_LEB LUTH_LU3 LUTH_LUA LUTH_LUB MNS_A_S MNS_M MNS_N MNS_S MNS_U NEW_C NEW_D NEW_E NEW_E2 NEW_FYA NEW_JKA NEW_JKB NEW_JSA NEW_K NEW_K2 NEW_KEL NEW_KPA NEW_OTH NEW_OTH NEW_P1 NEW_S2 NEW_U OTHER1 OTHER2 OTHER3 P1_ANTIG RBC_SPC1 RBC_SPC1 RBC_SPC2 RBC_SPC3 RBCANTI RBCANTI RH_ANT_C RH_ANT_D RH_ANT_E RH_ANT_F RH_ANT_V RHANT_C RHANT_E SP_ANTI SP_REFL SP_REFL SPECOOM
Coagulation Test
Complete Blood Count	CBC CBC_HEMA CBC_HEMA CBC_HEMO CBC_HEMO CBC_MCH CBC_MCH CBC_MCHC CBC_MCHC CBC_MCV CBC_MCV CBC_RBC CBC_RBC CBC_RDW CBC_RDW CBC_WBC CBC_WBC HEMAT HEMAT HEMAT HEMOG HEMOGLO HEMOGLOB NRBC PL_CNT PLAT_CT WC_COUNT
Comprehensive Metabolic Panel (CMP)	D_BILI D_BILI DIR_BIL GGT GGT SER_CHE SGPT SGPT T_BILI T_BILI TTL_BIL
Enzyme	LDH LDH LDH
General
Hemoglobin Electrophoresis	ALPHGENE HAPLOTYP HB_OTH_S HBA_A HBA_A2 HBA_F HBA_OTH HBA_PHEN HBA_S HBA_S PCT_HBS PHENSPEC
Iron	FERRITIN FERRITIN

Cardiovascular (0)

Genitourinary (4)

Data Element	Variables
Genitourinary Test
Urine Test	RED_CEL URINALY urindatfrmrand URINHEM

Immune (7)

Data Element	Variables
Serology	ACUTEINF EVID_ACI HEPATI_B HEPATI_C INFAGENT SERL_POS SEROLOGY

Microbiology Culture (13)

Data Element	Variables
Blood Culture	CULTSAMP CULTURE1 CULTURE2 CULTURE3 CULTURE4 RESULT1 RESULT2 RESULT3 RESULT4 SPECORG1 SPECORG2 SPECORG3 SPECORG4
Microbiology Culture

Musculoskeletal (0)

Neurologic (0)

Ocular (0)

Other (0)

Physical Exam (56)

Data Element	Variables
Abdomen	ABDOMEN ABDOMEN
Anthropometrics	HEAD_CIR HEIGHT HEIGHT PTHANDED WEIGHT WEIGHT WEIGHT
Cardiovascular	ARRHYTHM MURMUR MURMUR OTHERABN RHYTHM
Extremities	WHICH_LE WHICHLEG L_SHOLDR LE_EDEMA LEFTHIP LEGULCER R_SHOLDR RIGHTHIP
General	CHEST SKIN SKIN SPINE TONSILS L_NODES N_T_M GENAPPER HEADNECK EARS EYES PHYS_EX
Liver	LIVER TENDER
Reproductive
Respiratory	OTH_ABN WHEEZE RALES RHONCHI M_BREATH
Spleen	SPLEEN SPLEENSZ DIST_SPL
Vital signs	BP_DIAS BP_DIAS BP_DIAS BP_SYS BP_SYST BP_SYST PULSE PULSE RESPRATE RESPRATE TEMPERAT TEMPERAT

Reproductive (0)

Respiratory (0)

Therapeutics (215)

Medication (65)

Data Element	Variables
Antibiotics	O_ANT_SP O_ANTMTH O_ANTSPE O_ANTSPE OTH_ANTI OTH_ANTI OTH_ANTI OTHANTMT PEN_MTHS PEN_MTHS PEN_MTHS PENCILLN PENICILN PENICILN
Asthma
Blood Medication History
Cardiovascular
Compliance
Current Medication
Depression Medication History
Hydroxyurea	CUR_HU FOL_MTHS HU HU hu_datefrmrand HU_MTHS HYDROXYU HYDRX_MT REC_HU
Medication	ANY_MEDS ANY_MEDS ANYMEDS FOL_MTHS FOLAT_MT FOLATE FOLATE FOLATE IRON_MTH O_ANTMTH O_MD2_MT O_MD2_SP O_MED_MT O_MED_SP OT1_MEDS OT1_MEDS OT1_MTHS OT1_MTHS OT2_MEDS OT2_MEDS OT2_MTHS OTH_MED OTH_MEDS OTH_MEDS
Neurologic Medication History
Pain
SCD Medication	ADMN CH_THPY CMNTS CUR_CHEL CURRCHEL DEG_COMP disc_dtfrmrand DOSE FREQUENCY HU_MTHS IRON_MTH IRON_MTH IRONCHEL IRONCHEL IRONCHEL METHOD ON_CHEL OTH_SP
Sildenafil
Supplements

Surgery (0)

Transfusion (147)

Data Element	Variables
Blood Transfusion	ANT_C ANT_E ANT_KELL ANT_OTH ANT_OTH1 ANT_OTH2 ANT_OTH3 ANT_OTH4 BL_PROD chel_begfrmrand comp_dfrmrand d_admfrmrand d_disfrmrand datedrawfrmrand datedrawfrmrand DECISION DELIVR_F dt_antigfrmrand dt_cbcfrmrand dt_hemfrmrand EX_NUM ex_num FERRITIN FORMCOM FULL_EX HB_S HB_S HEMAT_RV HEMAT_TR LEUK_FLT LEUKP_SP LEUKPROC METHOD_F ML_IN_F ML_IN_S ML_OUT_F prevtrafrmrand prior_trfrmrand PT_TRANF PT_TRANS PT_TRANS REASON1 REASON2 REASON3 REC_WITH RECREGTR reflab_dfrmrand SEENTRAN SEENTRAN SIMPL_TR SP_BL_PR SP_OTHR SP_REC SPEC_RSN TOT_VOL TR_CC_IN TR_N_UN TRAN_TTL TRAN_TTL TRANF_C1 TRANF_C2 TRANF_C3 TRANF_C4 TRANF_C5 tranf_d1frmrand tranf_d2frmrand tranf_d3frmrand tranf_d4frmrand tranf_d5frmrand TRANFUSN TRANFUSN TRANPERF TRANPERF TRANSF_4 TRANSF_4 transf_dfrmrand transf_dfrmrand TRANSFSN TRANSFU TRANSFUS TRANSFUS TRANSNUM TRE_AMPM TRNSEEN1 TRNSEEN2 TRNSEEN3 TRNSEEN4 TRNSEEN5 TRS_AMPM tx_datefrmrand tx_datefrmrand TX_DEC1 TX_DEC2 TX_REASN tx_startfrmrand txbegind_frmrand VOL_REAS WHYTRAN1 WHYTRAN2 WHYTRAN3
Chronic Transfusion
Transfusion Complications	ALL_DAP ALL_RAP ALL2 ALL2_DAP ALL2_RAP ALLERGIC ANA_MILD ANA_SEV COMPNOTE DEL_HEM FEB_DAP FEB_RAP FEBRILE FEBRILE FLD_OVL FLUID HEM_DAP HEM_RAP HEMOLYT HOSP HYP_DAP HYP_RAP HYPERTE HYPERTEN OTH_DAP OTH_RAP OTHCOMPL OTHREAC RCTSEEN1 REAC_NUM REACT_C1 react_d1frmrand react_dtfrmrand react_dtfrmrand REACTTTL REACTTTL SEENREAC SEENREAC SEENREAC SP_COMPL T_REACTN T_REACTN T_REACTN T_REACTN TRANREAC TREATREA TREATREA

Transplantation (0)

Treatment (3)

Data Element	Variables
Oxygen
Treatment	HYDRATN OTHTREA TREASPE

Study ID	1008
Name	Stroke Prevention in Sickle Cell Anemia
Contact Email	biolincc@imsweb.com
Acronym	STOP I and II
Period	1994-2000, 2000-2006
Design	Clinical Trial
Study PI	Robert Adams, Donald Brambilla
Institution	Augusta University
URL	https://biolincc.nhlbi.nih.gov/studies/stop_ii/
CTGovID	https://clinicaltrials.gov/ct2/show/NCT00006182
Funding Agency	NHLBI

Overview	The STOP II trial evaluated whether prophylactic transfusion in patients with sickle cell disease and high risk of stroke can be safely halted after 30 months of treatment during which patients became low risk for stroke.
Focus Areas	STOP I - asymptomatic brain lesions detected by MRI in brain areas not involved in primary endpoints.
Outcomes	1. STOP I- clinically evident symptoms of cerebral infarction with consistent findings on magnetic resonance imaging (MRI), and/or symptomatic intracranial hemorrhage. 2. STOP II - stroke (cerebral infarction or intracranial hemorrhage) 3. STOP II - or reversion to abnormal velocity on TCD ultrasonography, defined as two consecutive studies with abnormal velocities, three consecutive studies with an average velocity of 200 cm/second or more, or three consecutive inadequate studies plus evidence of severe stenosis via imaging.

Data Location	BioLINCC, BioData Catalyst
Biospecimen Available	N/A
Data Consent	Data sharing via BioLINCC
Biospecimen Consent	NA
Contact Consent	NA
Genomic Data	No

Age Range	2-20
No. Participants	150
Inclusion Criteria	1. STOP I- Pediatric patients, ages 24 months to 16 years, with sickle cell anemia or S-beta zero thalassemia. 2. STOP II - Children and young adults 2 to 20 years of age with sickle cell anemia and no history of stroke. 3. STOP II- To be eligible for randomization, participants must have been at high risk for stroke as determined by abnormal transcranial Doppler (TCD) screening results, and then received at least 30 months of transfusions for stroke prevention during which the TCD results normalized. 4. STOP II- Subjects were considered regardless of participation in the previous STOP study. 5. STOP II - All participants were required to have normal results on two consecutive TCDs performed at least two weeks apart while they were receiving prophylactic transfusions and within four months before randomization.
Exclusion Criteria	1. Patient does not have a diagnosis of HbSS or HbS/ß0 Thalassemia. 2. Patient's age is not in the range of 2 through 16 years. 3. Patient has prior history of stroke. 4. Patient has received a bone marrow transplant.

Study Documentation Select All	1. STOP II Limited Access Data Manual 2. Codebook 3. Exam_Schedules
Forms Select All	1. Eligibility_Questionnaire_for_TCD_Screening_Exam 2. Eligibility Questionnaire for Patients on Transfusion For Primary Stroke Prevention for < 30 Months 3. Pre-Randomization Eligibility Questionnaire (for patients on transfusion for > 30 months) 4. Transcranial Doppler (TCD) Examination Form 5. Treatment Decision by Parent-Guardian of Newly Identified Child With Two Abnormal TCDs or One Abnormal TCD With TAMM Velocity > 220 CM/SEC 6. Signed Acknowledgement of New Information About the STOP II Study 7. Post-Trial Treatment Decision Form 8. Trial Randomization Form 9. Intake History Form 10. Physical Examination 11. Core Laboratory Form 12. Local Laboratory Form for Non-Randomized Patients Receiving Transfusions 13. Neurological Consultant Report 14. Head MRI Scan 15. Event CT Scan 16. Quarterly Progress Report for Randomized Patients 17. Quarterly Progress Report for Non-Randomized Patients Receiving Transfusions 18. Quarterly Medical Record Review 19. Missed Follow-Up Visit for Trial Patients 20. Reason for Overdue TCD Exam Visit for Randomized Patient 21. MRA Scan 22. Transfusion Form 23. Blood Unit Form 24. Transfusion History Log 25. Chelation Questionnaire for STOP II Randomized Patients 26. Transfusion History Log for Pre-STOP II Transfusions that Are Not in FOXPRO or ADEPT for STOP Randomized Patients 27. Neurological Event Form 28. Non-Neurological Event Form 29. Delayed Transfusion Reaction Form 30. Outcome of Hospitalization for Stroke, Meningitis, or Head Injury 31. Cause of Death Form 32. Endpoint Adjudication Decision 33. Quasi-Adjudication Neurological Event Form 34. Quasi-Adjudication Consensus 35. Patient Roster

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