Details - CureSickleCell

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Clinical status (679)

Behavior (0)

Blood (9)

Data Element	Variables
Acute Anemic Episode
Aplastic Crisis	sit020_parvovirus sit020_parvovirusyr sit021_parvovirus sit021_parvovirusyr
Bleeding
Other Blood Problem
Sickle Cell Disease	SCD_DIAG SCD_TYPE sit000_hassicklecell sit021_sicklediag sit130_hassicklecell13

Cancer (0)

Cardiovascular (2)

Data Element	Variables
Aneurysm
Cardiac Failure
Cardiovascular Problem
Heart Problem	sit181_cardiac sit181_cardiacnote

Digestive (4)

Data Element	Variables
Gastrointestinal Problem	sit020_bileductobstr sit021_bileductobstr sit181_gi sit181_ginote
Hepatitis
Liver Problem

Endocrine (2)

Data Element	Variables
Diabetes Mellitus
Endocrine Problem	sit181_endocrine sit181_endocrinenote

Family MedHx (15)

Data Element	Variables
Family MedHx	sit020_asthma1-6 sit020_hemgeno1-6 sit020_momsicklecell sit020_momsickletype sit020_otherfamheadache sit020_otherfammigraine sit021_asthma1-6 sit021_hemgeno1-6 sit021_momsicklecell sit021_momsickletype sit021_otherfamheadache sit021_otherfammigraine sit2a0_otherfamheadache sit2a0_otherfammigraine sit2a0_recurheadache

General Health (0)

Genitourinary (11)

Data Element	Variables
Genitourinary Problem	sit020_uti sit020_utinumb sit021_uti sit021_utinumb sit181_gu sit181_gunote
Kidney Problem	sit130_abnormalkidney
Priapism	sit020_priapism sit020_priapismduration sit021_priapism sit021_priapismduration
Renal Dialysis History

Immune (73)

Data Element	Variables
Fever
HIV Infection	sit000_hashiv sit130_hashiv13
Immune Problem
Infection	sit020_salminfec sit020_salminfecyr sit021_salminfec sit021_salminfecyr
Vaccination	sit020_fluvaccine sit020_fluvaccineyr sit020_haemophilusb sit020_haemophilusbyr sit020_hepa sit020_hepatst sit020_hepatstyr sit020_hepayr sit020_hepb sit020_hepbcoretst sit020_hepbcoretstyr sit020_hepbtst sit020_hepbtstyr sit020_hepbyr sit020_hepctst sit020_hepctstyr sit020_hivtst sit020_hivtstyr sit020_meningoa sit020_meningoayr sit020_meningoc sit020_meningocyr sit020_pneumo sit020_pneumoyr sit020_prevnar sit020_prevnaryr sit021_fluvaccine sit021_fluvaccineyr sit021_haemophilusb sit021_haemophilusbyr sit021_hepa sit021_hepatst sit021_hepatstyr sit021_hepayr sit021_hepb sit021_hepbcoretst sit021_hepbcoretstyr sit021_hepbtst sit021_hepbtstyr sit021_hepbyr sit021_hepctst sit021_hepctstyr sit021_hivtst sit021_hivtstyr sit021_meningoa sit021_meningoayr sit021_meningoc sit021_meningocyr sit021_pneumo sit021_pneumoyr sit021_prevnar sit021_prevnaryr sit2a0_hepatst sit2a0_hepatstyr sit2a0_hepatstyrna sit2a0_hepbcoretst sit2a0_hepbcoretstyr sit2a0_hepbcoretstyrna sit2a0_hepbtst sit2a0_hepbtstyr sit2a0_hepbtstyrna sit2a0_hepctst sit2a0_hepctstyr sit2a0_hepctstyrna sit2a0_hivtst sit2a0_hivtstyr sit2a0_hivtstyrna

Lymphatic (8)

Data Element	Variables
Sarcoidosis
Spleen Problem	sit020_splenic sit020_splenicage sit020_splenicnumb sit021_splene sit021_spleneyr sit021_splenic sit021_splenicage sit021_splenicnumb

Medical Event (22)

Data Element	Variables
Adverse event	sit170_ae
Death	sit020_dadalive sit020_dadcod sit020_daddob sit020_daddobuk sit020_daddodyr sit020_dadsicklecell sit020_dadsickletype sit020_momalive sit020_momcod sit020_momdodyr sit021_dadalive sit021_dadcod sit021_daddob sit021_daddobuk sit021_daddodyr sit021_dadsicklecell sit021_dadsickletype sit021_momalive sit021_momcod sit021_momdodyr
Disability Status
Hospitalization
Medical Event
Serious Adverse Event	sit170_sae

Medical History (3)

Data Element	Variables
Medical History	sit200_eventtype sit200_medevents sit200_otherevent

Mental Health (2)

Data Element	Variables
Anxiety
Depression
Emotional Health
Mental status	sit181_mentalcurr sit181_mentalexpl
Psychiatric Disorder

Musculoskeletal (6)

Data Element	Variables
Musculoskeletal Problem	sit181_muscular sit181_muscularnote
Osteomyelitis
Osteonecrosis	sit020_avasnecrosis sit020_avasnecrosisloc sit021_avasnecrosis sit021_avasnecrosisloc
Rheumatic Diseases

Neurodevelopmental (264)

Data Element	Variables
Behavior	sit221_bri22 sit221_control22 sit221_gec22 sit221_inconsistency22 sit221_inhibit22 sit221_initiate22 sit221_memory22 sit221_mi22 sit221_monitor22 sit221_negativity22 sit221_organization22 sit221_plan22 sit221_shift22
Cognition	sit101_abcons sit101_agecomp sit101_agename sit101_ageorient sit101_ageread sit101_agerep sit101_agewrite sit101_altcons sit101_altconsdet sit101_ball sit101_bicycle sit101_blackcat sit101_cat sit101_clock sit101_closeeyes sit101_cogbehavdef sit101_cogbehavdefobv sit101_dogrun sit101_inside sit101_langdefcomp sit101_langdefcompobv sit101_langdefprod sit101_langdefprodobv sit101_lefthand sit101_levelofcons sit101_necomp sit101_nename sit101_neorient sit101_neread sit101_nerep sit101_newrite sit101_outdoors sit101_pencil sit101_pointfloor sit101_righthand sit101_shirt sit101_signature sit101_skateboard sit101_stopgo sit101_stopread sit101_stoprep sit101_totalcomp sit101_totalname sit101_totalorient sit101_totalread sit101_totalrep sit101_totalwrite sit101_touchnose sit101_wash sit170_cantexpress sit170_cantunderstand sit200_cooperative sit200_distractions sit200_focused sit200_leastenjoy sit200_mostenjoy sit200_motivated sit200_notvalid sit200_pace sit200_understand sit200_valid sit200_whichinvalid sit200_whyinvalid sit200_whyvalid sit210_block21 sit210_matrix21 sit210_similarities21 sit210_vocab21
Developmental	sit020_completegrade sit020_currengrade sit020_grade1 sit020_grade2 sit020_grade3 sit020_grade4 sit020_grade504 sit020_iepgrade sit020_iepinplace sit020_inplace504 sit020_numb1 sit020_numb2 sit020_numb3 sit020_numb4 sit020_repeatgrade sit020_specialattn sit021_completegrade sit021_currengrade sit021_grade1 sit021_grade2 sit021_grade3 sit021_grade4 sit021_grade504 sit021_iepgrade sit021_iepinplace sit021_inplace504 sit021_numb1 sit021_numb2 sit021_numb3 sit021_numb4 sit021_repeatgrade sit021_specialattn sit200_attention sit200_classtype sit200_gradecurr sit200_graderepeated sit200_repeatgrade20 sit280_c504 sit280_daysmissed sit280_everfail sit280_failmed sit280_failnotlearn sit280_grade sit280_gradefailed sit280_iep sit280_meddays sit280_passlast sit280_specialed sit280_testname sit280_testscore sit2a0_completegrade sit2a0_currengrade sit2a0_grade1 sit2a0_grade2 sit2a0_grade3 sit2a0_grade4 sit2a0_grade504 sit2a0_iepgrade sit2a0_iepinplace sit2a0_inplace504 sit2a0_numb1 sit2a0_numb2 sit2a0_numb3 sit2a0_numb4 sit2a0_repeatgrade sit2a0_specialattn
Motor	sit101_abcoord sit101_abmove sit101_abmove2 sit101_abmovedet sit101_agedraw sit101_circle sit101_clumsy sit101_clumsydet sit101_cross sit101_gait10 sit101_lanklej sit101_larmataxia sit101_larmdist sit101_larmmotor sit101_larmprox sit101_lbicepj sit101_lbrach sit101_lfootbal sit101_lfoothop sit101_lhandfine sit101_lines sit101_lkneej sit101_llegataxia sit101_llegdist sit101_llegmotor sit101_llegprox sit101_lplantar sit101_ltricepj sit101_nedraw sit101_noteval sit101_ranklej sit101_rarmataxia sit101_rarmdist sit101_rarmmotor sit101_rarmprox sit101_rbicepj sit101_rbrach sit101_rfootbal sit101_rfoothop sit101_rhandfine sit101_rkneej sit101_rlegataxia sit101_rlegdist sit101_rlegmotor sit101_rlegprox sit101_rplantar sit101_rtricepj sit101_totaldraw sit101_triangle sit101_walkheel sit101_walktip sit101_whichfootheel sit101_whichfoottip sit181_motorcurr sit181_motorexpl sit200_listneeds sit200_specialneeds
Sensation	sit101_abgag sit101_abhearing sit101_abpalate sit101_abtonguestr sit101_abtrapstr sit101_corneal sit101_cornealdet sit101_dysarthria10 sit101_facesense sit101_facesensedet sit101_gag sit101_gaze sit101_gazedet sit101_hearing sit101_larmlt sit101_larmpp sit101_larmpro sit101_larmvib sit101_lfacelt sit101_lfacepp sit101_lleglt sit101_llegpp sit101_llegpro sit101_llegvib sit101_ltlowface sit101_ltlowfacewk sit101_ltrunklt sit101_ltrunkpp sit101_ltupface sit101_ltupfacewk sit101_oculardet sit101_ocularmove sit101_othervision sit101_palate sit101_papilledema sit101_pupils sit101_pupilsdet sit101_rarmlt sit101_rarmpp sit101_rarmpro sit101_rarmvib sit101_rfacelt sit101_rfacepp sit101_rleglt sit101_rlegpp sit101_rlegpro sit101_rlegvib sit101_rtlowface sit101_rtlowfacewk sit101_rtrunklt sit101_rtrunkpp sit101_rtupface sit101_rtupfacewk sit101_sensdefl sit101_sensdefobv sit101_sensdefr sit101_sensnoteval sit101_tonguestr sit101_trapstr sit101_vision

Neurologic (128)

Data Element	Variables
Meningitis	sit020_bacmeningitis sit020_bacmeningitisyr sit020_meningmeningitis sit020_meningmeningitisyr sit020_nonbacmeningitis sit020_nonbacmeningitisyr sit020_pneummeningitis sit020_pneummeningitisyr sit021_bacmeningitis sit021_bacmeningitisyr sit021_meningmeningitis sit021_meningmeningitisyr sit021_nonbacmeningitis sit021_nonbacmeningitisyr sit021_pneummeningitis sit021_pneummeningitisyr
Neurologic Event	sit000_hadneuroevent sit000_hasneuroprob sit101_altneurofunc sit101_armleft sit101_armlefth sit101_armright sit101_armrighth sit101_describeother sit101_eventdt sit101_faceleft sit101_facelefth sit101_faceright sit101_facerighth sit101_legleft sit101_leglefth sit101_legright sit101_legrighth sit101_neuroexam sit101_newtreatment sit101_numbness sit101_numbnessdet sit101_othersymptoms sit101_seedoc sit101_seeevent sit101_speechalt sit101_speechaltdet sit101_symptomsbefore sit101_symptomslast sit101_visionloss10 sit101_visionloss10det sit101_weakness sit101_weaknessdet sit101_whattreatment sit101_whosee sit130_hadneuroevent13 sit130_hasneuroprob13 sit170_halfvisionloss sit170_numb sit170_visionloss sit170_weak sit181_neuro sit181_neuronote
Seizure	sit020_fever sit020_otherfamseizure sit020_pain sit020_patientseizure sit020_seizurerelation sit021_fever sit021_otherfamseizure sit021_pain sit021_patientseizure sit021_seizurerelation sit101_posseizure sit101_posseizuredet sit2a0_fever sit2a0_otherfamseizure sit2a0_pain sit2a0_patientseizure sit2a0_seizurerelation
Stroke	sit020_mrireason sit020_silentstroke sit020_silentstrokeyr sit021_mrireason sit021_silentstroke sit021_silentstrokeyr sit101_describeill sit130_hasinfarct sit1a0_caudate_n sit1a0_centrum_semiovale sit1a0_cerebellum sit1a0_comments sit1a0_corona_radiate sit1a0_cortex sit1a0_dorsolateral sit1a0_external_capsule sit1a0_frontal sit1a0_frontal_lobe sit1a0_insula sit1a0_int_cap_ant_limb sit1a0_int_cap_genu sit1a0_int_cap_post_limb sit1a0_lentiform_n sit1a0_lesion_no sit1a0_lesion_no_list sit1a0_medial sit1a0_medulla_oblongata sit1a0_midbrain sit1a0_motor sit1a0_occipital sit1a0_occipital_lobe sit1a0_orbitofrontal sit1a0_pariental sit1a0_pariental_lobe sit1a0_pons sit1a0_pre_fr_other sit1a0_prefrontal sit1a0_premotor sit1a0_series_no sit1a0_side_of_brain sit1a0_slice_no sit1a0_temporal sit1a0_temporal_lobe sit1a0_thalamus sit1a0_uncertain sit1a0_white_mat_other
Transient Ischemic Attack	sit020_tia sit021_tia sit101_eventwas sit101_wasstroke sit590_descript2 sit590_descrpt1 sit590_tiaclass

Nutritional and Metabolic (0)

Ocular (2)

Data Element	Variables
Ocular Problem	sit181_eyes sit181_eyesnote
Sickle Retinopathy

Oral (0)

Pain (66)

Data Element	Variables
Abdominal Pain
General Pain
Headache	sit020_apnea sit020_daysleep sit020_fatigue sit020_headachedur sit020_headacheever sit020_headacheloc sit020_headachewhen sit020_howlongheadache sit020_lightsensitive sit020_nausea sit020_othersymp sit020_othersympsp sit020_recurheadache sit020_visualsymp sit020_visualsympsp sit021_apnea sit021_daysleep sit021_fatigue sit021_headachedur sit021_headacheever sit021_headacheloc sit021_headachewhen sit021_howlongheadache sit021_lightsensitive sit021_nausea sit021_othersymp sit021_othersympsp sit021_recurheadache sit021_visualsymp sit021_visualsympsp sit101_headache10 sit101_headache10 sit101_headache10det sit101_headache10det sit170_headache sit2a0_apnea sit2a0_daysleep sit2a0_fatigue sit2a0_headachedur sit2a0_headacheever sit2a0_headacheloc sit2a0_headachewhen sit2a0_howlongheadache sit2a0_lightsensitive sit2a0_nausea sit2a0_othersymp sit2a0_othersympsp sit2a0_visualsymp sit2a0_visualsympsp
Management	sit020_erpain sit020_erpainnum sit020_hosppain sit020_hosppainnum sit021_erpain sit021_erpainnum sit021_hosppain sit021_hosppainnum sit170_hospforpain
Pain Attack	sit101_episodetype sit101_painalso
Skeletal and Joint Pain	sit020_dactage sit020_dactnumb sit020_dactylitis sit021_dactage sit021_dactnumb sit021_dactylitis

Reproductive (8)

Data Element	Variables
Birth Outcome
Gestational Age	sit021_agedays021 sit021_agewks021
Menstruation	sit181_lastmensesdt sit181_mensesna
Pregnancy	sit000_ispregnant sit130_ispregnant13 sit181_contraceptive
Reproductive Behavior	sit181_sexactive

Respiratory (25)

Data Element	Variables
Acute Chest Syndrome	sit020_eracs sit020_eracsnum sit020_hospacs sit020_hospacsnum sit021_eracs sit021_eracsnum sit021_hospacs sit021_hospacsnum sit170_hospforacs
Asthma	sit020_parentasthma sit020_patientasthma sit020_patientasthmanow sit020_whichparentasthma sit021_parentasthma sit021_patientasthma sit021_patientasthmanow sit021_whichparentasthma sit2a0_parentasthma sit2a0_patientasthma sit2a0_patientasthmanow sit2a0_whichparentasthma
Lung Disease
Other Respiratory Problem	sit181_ent sit181_entnote sit181_respiratory sit181_respiratorynote

Skin (2)

Data Element	Variables
Skin Problem	sit181_skin sit181_skinnote

Sleep (1)

Data Element	Variables
Sleep Problem	sit200_hrssleep

Surgery History (26)

Data Element	Variables
Cardiovascular
Digestive	sit020_chole sit020_choleyr sit021_chole sit021_choleyr
Genitourinary
Lymphatic	sit020_splene sit020_spleneyr
Musculoskeletal
Ocular
Respiratory	sit020_tonsil sit020_tonsilyr sit021_tonsil sit021_tonsilyr
Surgery History	sit020_centralline sit020_othersurg1-6 sit020_othersurg1-6yr sit021_centralline sit021_othersurg1 sit021_othersurg1yr sit021_othersurg2 sit021_othersurg2yr sit021_othersurg3 sit021_othersurg3yr sit021_othersurg4 sit021_othersurg4yr sit021_othersurg5 sit021_othersurg5yr sit021_othersurg6 sit021_othersurg6yr

Demographics (54)

Demographics (34)

Data Element	Variables
Address
Age	sit101_age10
Ethnic Group	sit020_patientethnic sit021_patientethnic
Gender	sit020_patientgender sit021_patientgender sit101_gender10 sit210_gender21 sit221_gender22
Language	sit020_englishfirst sit020_englishfluent sit020_otherlang sit021_englishfirst sit021_englishfluent sit021_otherlang sit200_otherlang20 sit200_primarylang
National Origin	sit020_patientorigin sit020_patientotherorigin sit021_patientorigin sit021_patientotherorigin
Nuclear Family	sit020_gender1-6 sit020_havesibs sit020_numsibs sit020_samedad1-6 sit020_samemom1-6 sit021_gender1-6 sit021_havesibs sit021_numsibs sit021_samedad1-6 sit021_samemom1-6
Race	sit020_patientotherrace sit020_patientrace sit021_patientotherrace sit021_patientrace

Social Determinants of Health (SDoH) (0)

Socioeconomic Status (20)

Data Element	Variables
Annual Income	sit020_famincome sit021_famincome
Education	sit020_hohdegree sit021_hohdegree
Employment Status
Household	sit020_older17 sit020_younger16 sit021_older17 sit021_younger16
Insurance	sit020_govhealth sit020_medicaid sit020_noinsurance sit020_private sit021_govhealth sit021_medicaid sit021_noinsurance sit021_private sit2a0_govhealth sit2a0_medicaid sit2a0_noinsurance sit2a0_private
Marital Status

Environmental Exposure (3)

Exposure (3)

Data Element	Variables
Exposure	sit020_anyonesmoke sit021_anyonesmoke sit2a0_anyonesmoke
Lead Poisoning

Health Care (11)

Acute Care Utilization (0)

Healthcare utilization (0)

Health Services (0)

Hospitalization (11)

Data Element	Variables
Final Diagnosis	sit020_erasthma sit020_erasthmanum sit020_hospasthma sit020_hospasthmanum sit021_erasthma sit021_erasthmanum sit021_hospasthma sit021_hospasthmanum sit170_hospforasthma sit170_hospforpriap
Hospitalization
ICU	sit170_icuadmin

SCD Management (0)

Imaging (23)

Angiogram (0)

CT Scan (2)

Data Element	Variables
Abdomen
Bone
Brain	sit101_brainimage sit101_imageresult
Chest

Echocardiogram (0)

Electrocardiogram (ECG) (0)

Electrodiagnosis (0)

General Imaging (0)

MRI/MRA (3)

Data Element	Variables
Brain	sit130_hasbraces13 sit130_newinfarct sit000_hasbraces
Heart
Hip
Liver

Nuclear Medicine Imaging (0)

PET scan (0)

Transcranial Doppler (TCD) (18)

Data Element	Variables
Brain	sit051_notcomplete sit051_scanincrement sit051_tcdcomments sit051_tcdcomplete sit051_tcdcritmet sit051_tcddt sit051_tcdend sit051_tcdimage sit051_tcdnonimage sit051_tcdresult sit051_tcdstart sit051_tcdtrans sit051_tcdvelhilt sit051_tcdvelhirt sit051_tcdvellolt sit051_tcdvellort sit051_verincrement sit130_failtcd

Ultrasound (0)

X-Ray (0)

Parent/Caretaker (26)

Demographics (22)

Data Element	Variables
Demographics	sit020_fatherethnic sit020_fatherorigin sit020_fatherotherorigin sit020_fatherotherrace sit020_fatherrace sit020_motherethnic sit020_motherorigin sit020_motherotherorigin sit020_motherotherrace sit020_motherrace sit021_fatherethnic sit021_fatherorigin sit021_fatherotherorigin sit021_fatherotherrace sit021_fatherrace sit021_motherethnic sit021_motherorigin sit021_motherotherorigin sit021_motherotherrace sit021_motherrace
Socioeconomic Status	sit020_pcgmarried sit021_pcgmarried

Psychosocial (4)

Data Element	Variables
Psychosocial
Relationship	sit020_pcgotherrelation sit020_pcgtopatient sit021_pcgotherrelation sit021_pcgtopatient

Quality of Life (0)

General Health (0)

Pain (0)

Patient Functioning (0)

SCD (0)

Tests (236)

Biopsy (0)

Blood (132)

Data Element	Variables
Blood Differential Test	sit020_bands sit020_neutrophils sit020_reticulocytes sit020_reticulocytessi sit020_reticunit sit021_bands sit021_neutrophils sit021_reticulocytes021 sit021_reticulocytessi sit021_reticunit sit23_reticunit_cv sit233_basophils sit233_eosinophils sit233_lympho sit233_monocytes sit233_neutro sit233_reticulo231 sit233_reticulocountsi sit2a0_bands sit2a0_neutrophils sit2a0_reticulocytes
Blood Gases	sit020_baselineoxy sit021_baselineoxy sit181_o2sat sit2a0_baselineoxy
Blood Smear
Blood Typing
Coagulation Test
Complete Blood Count	sit020_hem sit020_hematocrit sit020_hemsi sit020_hemunit sit020_mch sit020_mchc sit020_mchcsi sit020_mchcunit sit020_mcv sit020_mpv sit020_platelets sit020_plateletssi sit020_plateunit sit020_rbc sit020_wbc sit020_wellhem sit020_wellhemsi sit020_wellhemunit sit021_hem sit021_hematocrit sit021_hemsi sit021_hemunit sit021_mch sit021_mchc sit021_mchcsi sit021_mchcunit sit021_mcv021 sit021_mpv sit021_platelets021 sit021_plateletssi021 sit021_plateunit sit021_rbc021 sit021_wbc021 sit021_wellhem sit021_wellhemsi sit021_wellhemunit sit23_platunit_cv sit233_hemunit_cv sit233_platcount233 sit233_platcountsi233 sit233_redcount sit233_whitecount231 sit2a0_hematocrit sit2a0_mch sit2a0_mchc sit2a0_mcv sit2a0_mpv sit2a0_platelets sit2a0_rbc sit2a0_wbc sit2a0_wellhem sit2a0_wellhemsi sit2a0_wellhemunit_cv
Comprehensive Metabolic Panel (CMP)	sit020_biliunit sit020_bun sit020_bunsi sit020_bununit sit020_creatinine sit020_creatininesi sit020_creatunit sit020_totbilirubin sit020_totbilirubinsi sit021_biliunit sit021_bun021 sit021_bunsi sit021_bununit sit021_creatinine sit021_creatininesi021 sit021_creatunit sit021_totbilirubin sit021_totbilirubinsi021 sit23_albumunit_cv sit23_altunit_cv sit23_astunit_cv sit23_bilidirunit_cv sit23_biliunit_cv sit23_creatunit_cv sit233_albumin sit233_albuminsi sit233_alt sit233_altsi sit233_ast sit233_astsi sit233_bilirubind sit233_bilirubindsi sit233_bilirubint sit233_bilirubintsi sit233_bun23 sit233_creatinine23 sit233_creatininesi23 sit233_hem23 sit233_hemsi23 sit233_otherpc
Enzyme	sit23_ldhunit_cv sit233_ldh231 sit233_ldhsi231
General
Hemoglobin Electrophoresis	sit020_sicklediag sit020_typea sit020_typef sit020_types sit021_typea sit021_typef sit021_types
Iron	sit23_ferrunit_cv sit233_ferritin231 sit233_ferritinsi231 sit2a0_ferritin

Cardiovascular (0)

Genitourinary (0)

Immune (6)

Data Element	Variables
Serology	sit233_hepa23 sit233_hepb23 sit233_hepbcore sit233_hepbsurface sit233_hepc sit233_hiv

Microbiology Culture (0)

Musculoskeletal (0)

Neurologic (0)

Ocular (0)

Other (1)

Data Element	Variables
Other	sit200_lastmealti

Physical Exam (97)

Data Element	Variables
Abdomen	sit101_abdomen10 sit181_abdomencurr sit181_abdomenexpl
Anthropometrics	sit020_height sit020_heightsi sit020_heightunit sit020_weight sit020_weightsi sit020_weightunit sit021_birthwt021 sit021_height sit021_heightsi sit021_heightunit sit021_weight sit021_weightsi sit021_weightunit sit101_headcir10 sit101_height10 sit101_weight10 sit181_height18 sit181_ofc sit181_weight18
Cardiovascular	sit101_arrhythmia10 sit101_murmur10 sit181_cardiocurr sit181_cardioexpl sit181_cvlinecurr sit181_cvlineexpl
Extremities	sit181_extremcurr sit181_extremexpl
General	sit020_handedness sit021_handedness sit101_chest10 sit101_handed10 sit101_neck10 sit101_skin10 sit101_spine10 sit181_appearance sit181_appearancenote sit181_cranialcurr sit181_cranialexpl sit181_gencurr sit181_genexpl sit181_gucurr sit181_guexpl sit181_heentcurr sit181_heentexpl sit181_lymphcurr sit181_lymphexpl sit181_rectumcurr sit181_rectumexpl sit181_reflexcurr sit181_reflexexpl sit181_sensorycurr sit181_sensoryexpl sit181_skincurr sit181_skinexpl sit181_tannercurr sit181_tonecurr sit181_toneexpl sit2a0_handedness
Liver	sit181_livercurr sit181_liverexpl sit181_livermeas
Reproductive
Respiratory	sit181_lungscurr sit181_lungsexpl
Spleen	sit181_spleencurr sit181_spleenexpl sit181_spleenmeas
Vital signs	sit020_diastolic sit020_hidiabp sit020_hisysbp sit020_pulse sit020_respiration sit020_systolic sit020_tempf sit020_tempsi sit020_tempunit sit021_diastolic sit021_hidiabp sit021_hisysbp sit021_pulse sit021_respiration sit021_systolic sit021_tempf sit021_tempsi sit021_tempunit sit101_diast10 sit101_pulse10 sit101_resp10 sit101_syst10 sit101_temp10 sit181_bpdia sit181_bpsys sit181_pulse18 sit181_resprate sit181_temperature

Reproductive (0)

Respiratory (0)

Therapeutics (125)

Medication (79)

Data Element	Variables
Antibiotics
Asthma
Blood Medication History
Cardiovascular
Compliance
Current Medication
Depression Medication History
Hydroxyurea	sit000_recvdtreatment sit130_recvdtreatment13 sit181_hydroxdt sit181_hydroxyurea sit181_hydroxyureadu
Medication	sit020_folic sit020_othermed1 sit020_othermed1sp sit020_othermed2 sit020_othermed2sp sit020_othermed3 sit020_othermed3sp sit020_othermed4 sit020_othermed4sp sit020_othermed5 sit020_othermed5sp sit020_oxygen sit020_penicillin sit021_folic sit021_othermed1 sit021_othermed1sp sit021_othermed2 sit021_othermed2sp sit021_othermed3 sit021_othermed3sp sit021_othermed4 sit021_othermed4sp sit021_othermed5 sit021_othermed5sp sit021_oxygen sit021_penicillin sit181_allrdrugs sit181_drugallergy sit181_folate sit181_folatedt sit181_folatedu sit181_pcnvk sit181_pcnvkdt sit181_pcnvkdu sit200_med120 sit200_med1time sit200_med220 sit200_med2time sit200_med320 sit200_med3time sit200_med420 sit200_med4time sit200_medstoday sit314_benadryl sit314_claritin sit314_nonegiven31 sit314_other31 sit314_tylenol
Neurologic Medication History
Pain	sit020_effective sit020_headachemeds sit020_headachemedsabort sit020_headachemedsprv sit021_effective sit021_headachemeds sit021_headachemedsabort sit021_headachemedsprv sit2a0_dailyprev sit2a0_effective sit2a0_headachemed sit2a0_medtaken1a sit2a0_medtaken1b sit2a0_medtaken2a sit2a0_medtaken2b sit2a0_medtaken3a sit2a0_medtaken3b sit2a0_medtaken4a sit2a0_medtaken4b sit2a0_medtaken5a sit2a0_medtaken5b sit2a0_medtaken6a sit2a0_medtaken6b
SCD Medication	sit181_desferal sit181_desferaldt sit181_desferaldu
Sildenafil
Supplements

Surgery (0)

Transfusion (46)

Data Element	Variables
Blood Transfusion	sit000_hasalloimmun sit000_onbloodtrans sit000_onbloodtrans sit130_hasalloimmun13 sit314_acutechest sit314_alt314 sit314_altdt314 sit314_altnd314 sit314_ast314 sit314_astdt314 sit314_astnd314 sit314_biliru314 sit314_bilirudt314 sit314_bilirund314 sit314_bun314 sit314_bundt314 sit314_bunnd314 sit314_creatin314 sit314_creatindt314 sit314_creatinnd314 sit314_ferritindt sit314_ferritinnd sit314_ferritinresult311 sit314_hemlevel sit314_hemleveldt sit314_hemlevelnd sit314_hempct311 sit314_hempctdt sit314_hempctnd sit314_modtransamt311 sit314_modtransnd sit314_modtransremove311 sit314_neurosymptoms sit314_organfail sit314_otherindicate sit314_otherreason sit314_painful sit314_pheresis sit314_priapism31 sit314_simpletransamt311 sit314_simpletransnd sit314_surgery sit314_transreason sit314_urine314 sit314_urinedt314 sit314_urinend314
Chronic Transfusion
Transfusion Complications

Transplantation (0)

Treatment (0)

Study ID	1004
Name	Silent Cerebral Infarct Transfusion Multi-Center Clinical Trial
Contact Email	m.debaun@vumc.org
Acronym	SIT Trial
Period	2004 - 2013
Design	Clinical trial
Study PI	Michael R. DeBaun
Institution	Washington University School of Medicine
URL	https://clinicaltrials.gov/ct2/show/NCT00072761
CTGovID	https://clinicaltrials.gov/ct2/show/NCT00072761
Funding Agency	NINDS

Overview	The primary aim of this trial is to determine the effectiveness of blood transfusion therapy for the prevention of silent strokes in children with sickle cell anemia. This trial will also determine if blood transfusion therapy will prevent further cerebral injury and if the measured benefits of the therapy outweigh the risks associated with it.
Focus Areas	1. Changes in cognition, which were assessed bymeasurement of IQ scores with the Wechsler Abbreviated Scale of Intelligence12 or theWechsler Preschool and Primary Scale of Intelligence III 2. Scores on theBehavior Rating Inventory of Executive Function (BRIEF)
Outcomes	Recurrence of infarct or hemorrhage as determined by neuroimaging, clinical evidence of permanent neurologic injury, or both. A new infarct had to meet the criteria for a silent cerebral infarction; an enlarged silent cerebral infarct was defined as a previously identified silent cerebral infarct that increased by at least 3 mm alongany linear dimension in any plane on MRI. A transient ischemic attack (TIA), which wasincluded in secondary analyses of neurologic outcomes, was defined as an event thatresulted in focal neurologic deficits that lasted less than 24 hours, did not result inabnormalities on T2-weighted or FLAIR images that were indicative of an acute infarct, andhad no other reasonable medical explanation.

Data Location	Vanderbilt University Medical Center
Biospecimen Available	Blood; Urine;
Data Consent	Research team will only use and share information discussed in consent form, de-identified.
Biospecimen Consent	By agreeing to participate, you authorize the use of your tissue for research that may benefit others.
Contact Consent	NA
Genomic Data	No

Age Range	0-99
No. Participants	196
Inclusion Criteria	1. Patient must have sickle cell anemia (hemoglobin SS) or sickle ß thalassemia (hemoglobin Sß-thal) as confirmed at the local institution by hemoglobin analysis after six months of age. 2. Patient must be 5 through 14 years of age (i.e., must have attained their 5th, but not their 15th birthday). 3. Informed consent with assent in accordance with the institutional policies (institutional IRB approval) and Federal guidelines (approved by the United States Department of Health and Human Services) must be signed by the patient's legally authorized guardian acknowledging written consent to join the study. 4. Patient must have a silent cerebral infarct defined as a silent cerebral infarct like lesion on the study screening MRI based on consensus of opinion of two of three members of the neuroradiology committee and normal neurologic examination or a focal neurologic examination where the abnormality is inconsistent with neuroanatomical location. The neurologic examination will be done by the site neurologist and adjudicated by the neurology committee.
Exclusion Criteria	1. Patient with a history of a focal neurologic event lasting more than 24 hours with medical documentation or a history of prior overt stroke. 2. Patient with other neurological problems, such as neurofibromatosis, lead poisoning, non-febrile seizure disorder, or tuberous sclerosis. 3. Patient with HIV infection. 4. Pregnancy or lactating females. 5. Patient who received treatment with anti-sickling drugs or hydroxyurea within 3 months or anticipate receiving anti sickling drugs or hydroxyurea during the course of the study. 6. Patients on chronic blood transfusion therapy for other reasons. 7. Patient judged not likely to be compliant by his/her hematologist and study coordinator based on previous compliance in clinic appointments and following advice. 8. Patient unable to receive blood transfusion because of alloimmunization. 9. Patients who have or anticipate receiving permanent (or semi-permanent) metallic structures attached to their body. (e.g., braces on teeth, body piercings), which their physicians believe will interfere with the MRI of the head 10. Patients with any person living in the same household who have been randomly assigned in the SIT Trial. 11. Patients who have more than two standard care TCD studies with a TAMMV equal to or = 200 cm/sec by the non-imaging technique, or TAMX or equivalent =185 cm/sec for the imaging technique or a TCD that is indeterminate 12. Patients who have one standard care TCD study with a TAMMV equal to = 200 cm/sec by the non-imaging technique, or TAMX or equivalent =185 cm/sec for the imaging technique AND one standard care TCD study that is indeterminate 13. Patients whose pre-randomization MRI (2nd MRI immediately prior to randomization) show progressive silent infarct lesion 14. Patients with abnormal kidney function (creatinine > 2x upper limit of normal).

Study Documentation Select All	Silent_Cerebral_Infarct_Transfusion_Trial_Manual_Procedures
Forms Select All	1. Screening_Eligibility_Form 2. Consent_and_Assent_for_Screening 3. Demographic_And_Phenotypic_Information 4. Phlebotomy_And_Genomics_Form 5. Transmittal_Biological_Samples 6. Transcranial_Doppler_Tcd_Performance_Eefe 7. Neurological_Consultant_Report 8. Consent_And_Assent_For_Randomization 9. Randomization_Eligibility_Form 10. Headache_Event 11. Epilepsy_InChildren_With_Sic 12. NIH_Pediatric_Stroke_Scale_Su 13. Interim_Medical_History 14. Hematology_And_Physical_Exam 15. Cognitive_Battery_Checklist 16. Testing_Evaluation_Form 17. Psychological_Test_Checklist_Wasi_Eccc 18. Psychological_Test_Checklist_Brief_Dfdc 19. Baseline_Laboratory_Form 20. Serious_Adverse_Event_Report 21. Adverse_Event_Reporting_NonC 22. Infection_Complication 23. Toxicity_Worksheet 24. Report_Card 25. CauseOfDeath_SITTrialAdHo 26. Headache_Event_Neurologist 27. Transfusion_Form 28. TransfusionReactionForm_S 29. Child_Health_Questionnaire_Transmittal_Form 30. Hospitalization 31. Chelation_Therapy_Complicat 32. Additional_Siblings 33. MRI_Failure 34. Drop_During_Screening_Phase 35. End_Point 36. Missed_Form_Report 37. Missed_Visit 38. Central_VenousLine 39. Consent_Questionnaire 40. Phlebotomy_And_Proteomics_Form 41. Transmittal_Of_Proteomics_Samples 42. WithdrawalFormCompletedAf 43. ChelatingAgents_SITTrialA 44. PatientTransferForm_SITTr 45. Baseline Infarctlike Lesion Measurement 46. Secondary End Point Form Tia

Working...

Metadata Catalog

Study Detail

Study Publications

Data Element	Variables
Achenbach Child Behavior Checklist (CBCL)
Bayley Scale of Infant and Toddler Development
Behavior Rating Inventory of Executive Function (BRIEF)	sit221_bri22 sit221_control22 sit221_gec22 sit221_gender22 sit221_inconsistency22 sit221_inhibit22 sit221_initiate22 sit221_memory22 sit221_mi22 sit221_monitor22 sit221_negativity22 sit221_organization22 sit221_plan22 sit221_shift22
California Verbal Learning Test
Children's Memory Scale
Connor's Continuous Performance Test II
NeuroQOL Cognitive Function
Peabody Picture Vocabulary Test (PPVT)

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
Oral Verbal Fluency Test
Purdue Pegboard (SPA version)
Vineland Adaptive Behavior Summary
Wechsler Intelligence Scales	sit210_block21 sit210_gender21 sit210_matrix21 sit210_similarities21 sit210_vocab21
Woodcock-Johnson Revised, Tests of Achievement
Woodcock-Johnson, Revised, Tests of Cognitive Ability