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Study Detail

Study ID 1020
Name Comprehensive Sickle Cell Centers' (CSCC) C-Data Project
Contact Email slieff@rhoworld.com
Acronym CSCC-C-Data
Period 2005 - 2008
Design Observational cohort study
Study PI Susi Lieff
Institution Statistics and Data Management Center (SDMC) (RhoFed)
URL https://clinicaltrials.gov/ct2/show/NCT00529061
CTGovID https://clinicaltrials.gov/ct2/show/NCT00529061
Funding Agency NHLBI
Grant Number 5U54HL070587-05
Overview The purpose of this study is to gather medical information from children and adults with SCD and establish a database so that researchers can contact people to participate in future SCD research studies.
Focus Areas 1. To gather medical information about a large number of people with SCD over a long period of time
2. To identify potential participants for future SCD clinical trials
3. To collect information about how SCD affects quality of life
4. To evaluate the relationship between SCD patients' characteristics and medical events
Outcomes 1. Quality of Life
2. SCD Pain
Data Location RTI International
Biospecimen Available N/A
Data Consent Data sharing via BioLINCC
Biospecimen Consent NA
Contact Consent NA
Genomic Data No
Age Range 0-99
No. Participants 3640
Inclusion Criteria 1. Diagnosis of SCD
2. Evaluated within the 24 months prior to study entry in the hospital or clinical setting
3. Expected to return episodically or regularly for care at one of the CSCCs
Exclusion Criteria 1. Deceased CSCC patient
2. Inactive CSCC patient
Study Documentation
  Select All
   1. printSpecs_PATIENT_NEW_R_2010_01_18_10_10
   2. printSpecs_MH_INTVW_R_2010_01_18_10_10
   3. printSpecs_MH_CHART_R_2010_01_18_10_10
   4. C-Data Protocol V5.3 Jul 3 2008 CLEAN
Forms
  Select All
   1. C-Data 5.2 annotated CRFs
   2. C-Data_Phase5000_Medical_History_I_Page_10
   3. C-Data_Phase5000_Enrollment
   4. C-Data_Phase5000_Healthcare_Satisfaction_Module_Parent_Report
   5. C-Data_Phase5000_Medical_History_I_Hospital_Admissions
   6. C-Data_Phase5000_Medical_History_I_Medical_Conditions
   7. C-Data_Phase5000_Medical_History_I_Page_1
   8. C-Data_Phase5000_Medical_History_I_Selected_Diagnostic_Tests
   9. C-Data_Phase5000_Medical_History_I_Selected_Lab_Tests
   10. C-Data_Phase5000_Medical_History_I_Selected_Medications
   11. C-Data_Phase5000_Medical_History_I_Surgical_History
   12. C-Data_Phase5000_Medical_History_I_Transfusion_History
   13. C-Data_Phase5000_Medical_History_IIA_Patient_Interview
   14. C-Data_Phase5000_Medical_History_IIB_Parent_Interview
   15. C-Data_Phase5000_Multidimensional_Fatigue_Scale_Child_Report
   16. C-Data_Phase5000_Multidimensional_Fatigue_Scale_Parent_Report_Child
   17. C-Data_Phase5000_Multidimensional_Fatigue_Scale_Parent_Report_Teens
   18. C-Data_Phase5000_Multidimensional_Fatigue_Scale_Parent_Report_Toddlers
   19. C-Data_Phase5000_Multidimensional_Fatigue_Scale_Parent_Report_Young_Child
   20. C-Data_Phase5000_Multidimensional_Fatigue_Scale_Teen_Report
   21. C-Data_Phase5000_Multidimensional_Fatigue_Scale_Young_Child_Report
   22. C-Data_Phase5000_Pediatric_Pain_Questionnaire_Child
   23. C-Data_Phase5000_Pediatric_Pain_Questionnaire_Parent_Child
   24. C-Data_Phase5000_Pediatric_Pain_Questionnaire_Parent_Teen
   25. C-Data_Phase5000_Pediatric_Pain_Questionnaire_Parent_Young_Child
   26. C-Data_Phase5000_Pediatric_Pain_Questionnaire_Teen
   27. C-Data_Phase5000_Pediatric_Pain_Questionnaire_Young_Child
   28. C-Data_Phase5000_Pediatric_Quality_Life_Inventory_Child_Report
   29. C-Data_Phase5000_Pediatric_Quality_Life_Inventory_Parent_Report_Child
   30. C-Data_Phase5000_Pediatric_Quality_Life_Inventory_Parent_Report_Teens
   31. C-Data_Phase5000_Pediatric_Quality_Life_Inventory_Parent_Report_Toddlers
   32. C-Data_Phase5000_Pediatric_Quality_Life_Inventory_Parent_Report_Young_Child
   33. C-Data_Phase5000_Pediatric_Quality_Life_Inventory_Teen_Report
   34. C-Data_Phase5000_Pediatric_Quality_Life_Inventory_Young_Child_Report
   35. C-Data_Phase5000_SF-36_Health_Survey
   36. C-Data_Phase5000_Short_Patient_Satisfaction_Questionnaire
   37. C-Data_Phase6000_Acute_Chest_Syndrome
   38. C-Data_Phase6000_Acute_Renal_Failure
   39. C-Data_Phase6000_Acute_Splenic_Sequestration
   40. C-Data_Phase6000_Annual__Part_I_Medical_Conditions
   41. C-Data_Phase6000_Annual_Part_I_Encounter_Summary
   42. C-Data_Phase6000_Annual_Part_I_Medications_Lab_Tests
   43. C-Data_Phase6000_Annual_Part_I_Page_1
   44. C-Data_Phase6000_Annual_Part_I_Page_9
   45. C-Data_Phase6000_Annual_Part_I_Selected_Diagnostic_Tests
   46. C-Data_Phase6000_Annual_Part_I_Surgical_Procedures
   47. C-Data_Phase6000_Annual_Part_I_Transfusions
   48. C-Data_Phase6000_Aplastic_Episode
   49. C-Data_Phase6000_Avascular_Necrosis
   50. C-Data_Phase6000_Bacteremia_Sepsis_Meningitis
   51. C-Data_Phase6000_Chronic_Hypersplenism
   52. C-Data_Phase6000_Chronic_Renal_Insufficiency
   53. C-Data_Phase6000_Elevated_TCD_Velocities
   54. C-Data_Phase6000_Hematuria
   55. C-Data_Phase6000_Hepatic_Sequestration
   56. C-Data_Phase6000_Intrahepatic_Cholestasis
   57. C-Data_Phase6000_Myocardial_Infarction
   58. C-Data_Phase6000_Osteomyelitis
   59. C-Data_Phase6000_Priapism
   60. C-Data_Phase6000_Proteinuria_Nephrotic_Syndrome
   61. C-Data_Phase6000_Pulmonary_Embolism
   62. C-Data_Phase6000_Pulmonary_Hypertension
   63. C-Data_Phase6000_Seizure
   64. C-Data_Phase6000_Stroke_Hemorrhagic
   65. C-Data_Phase6000_Stroke_Infarctive
   66. C-Data_Phase6000_Stroke_Silent_Cerebral_Infarct
   67. C-Data_Phase6000_Transient_Ischemic_Attack
   68. C-Data_Phase6000_Viral_Hepatitis
   69. C-Data_Phase7000_Annual_Part_IIA
   70. C-Data_Phase7000_Annual_Part_IIB
   71. C-Data_Phase8000_Termination_Transfer

Data ElementVariables
Substance Use ANYALCO
ANYALCO_ UNK
ANYTOB
ANYTOB_ UNK
BEER_R
BEERFR
CIGAR_R
CIGARFR
CIGET_R
CIGETFR
CURALCO
CURALCO_ UNK
CURTOB
CURTOB_ UNK
DRINK_R
DRINKFR
SNUF_R
WINE_R
WINEFR
Data ElementVariables
Acute Anemic Episode COND4
COND4_UNK
COND4YY
Aplastic Crisis COND1
COND1_UNK
COND1YY
E_AN1
E_AN1_SUM
H_AN1
H_AN1_SUM
Bleeding
Other Blood Problem COND2
COND2_UNK
COND2YY
COND3_UNK
COND3YY
E_AN2
E_AN2_SUM
H_AN3
H_AN3_SUM
Sickle Cell Disease DIAG_BY_ NB_ SCREEN_ UNK
DIAG_BY_ NB_SCREEN
Data ElementVariables
Aneurysm
Cardiac Failure E_CARF
E_CARF_ SUM
H_CARF
H_CARF_ SUM
Cardiovascular Problem H_CA2
H_CA2_SUM
Heart Problem COND5
COND5_UNK
COND5YY
COND6
COND6_UNK
COND6YY
E_CA3
E_CA3_SUM
Data ElementVariables
Gastrointestinal Problem COND15
COND15_ UNK
COND15YY
COND16
COND16_ UNK
COND16YY
COND19
COND19_ UNK
COND19YY
E_FEVER1_ SUM
GBD
GBD_UNK
GBDYY
H_GBD
H_GBD_SUM
H_GI1
H_GI1_SUM
H_GI2
H_GI2_SUM
H_GI5
H_GI5_SUM
Hepatitis COND20
COND20_ UNK
COND20YY
Liver Problem COND17
COND17_ UNK
E_GI3
E_GI3_SUM
E_GI4
E_GI4_SUM
E_GI6
E_GI6_SUM
E_LDHF
E_LDHF_SUM
E_LDHS
E_LDHS_ SUM
LDHS
LDHS_UNK
LDHSYY
Data ElementVariables
Diabetes Mellitus E_DIABETES
Endocrine Problem
Data ElementVariables
Family MedHx SIBNSCD_R
SIBWSCD_R
Data ElementVariables
General Health SF36_N_GEN
SF36_SFQ1
SF36_SFQ2
SF36_SFQ6
T_GEN
Data ElementVariables
Genitourinary Problem COND37
COND37_ UNK
COND37YY
H_RN3
H_RN3_SUM
Kidney Problem COND35
COND35_ UNK
COND35YY
COND36
COND36_ UNK
COND36YY
COND39
COND39_ UNK
COND39YY
COND40
COND40_ UNK
COND40YY
H_RN1
H_RN1_SUM
H_RN6
H_RN6_SUM
Priapism COND38
COND38_ UNK
COND38YY
E_RN4
E_RN4_SUM
H_RN4
H_RN4_SUM
Renal Dialysis History E_RDD
E_RDD_SUM
Data ElementVariables
Fever E_ DIABETES_ SUM
E_FEVER1
H_FEVER1
H_FEVER1_ SUM
HIV Infection
Immune Problem
Infection
Vaccination
Data ElementVariables
Sarcoidosis
Spleen Problem COND41
COND41_ UNK
COND41YY
COND42
COND42_ UNK
COND42YY
E_SPL1
E_SPL1_SUM
H_AN4
H_AN4_SUM
Data ElementVariables
Adverse event
Death TERM_ AUTOPNA
TERM_ AUTOPSY
TERM_ DIEHOSP
TERM_ PRIMARY
TERM_ SANEM
TERM_ SECDCAU
TERM_ SHEPF
TERM_ SMALIG
TERM_ SOTHR
TERM_ SRENAL
TERM_ SRESP
TERM_ SSEPSIS
TERM_ SSPLEN
TERM_ SSYSFL
TERM_SCAR
TERM_SCNS
Disability Status
Hospitalization
Medical Event
Serious Adverse Event
Data ElementVariables
Musculoskeletal Problem COND21
COND21_ UNK
COND21YY
COND23
COND23_ UNK
COND23YY
H_MU1
H_MU1_SUM
Osteomyelitis COND24
COND24_ UNK
COND24YY
E_MU4
E_MU4_SUM
H_MU4
H_MU4_SUM
Osteonecrosis
Rheumatic Diseases
Data ElementVariables
Meningitis COND44
COND44_ UNK
COND44YY
H_BAC1
H_BAC1_ SUM
Neurologic Event
Seizure COND9
COND9_UNK
COND9YY
H_CNS1
H_CNS1_ SUM
Stroke COND10
COND10_ MISS
COND10_ UNK
COND10YY
COND11
COND11_ UNK
COND11YY
COND12
COND12_ UNK
COND12YY
COND14
COND14_ UNK
COND14YY
E_CNS2
E_CNS2_ SUM
E_CNS3
E_CNS3_ SUM
E_CNS4
E_CNS4_ SUM
H_CNS3
H_CNS3_ SUM
H_CNS6
H_CNS6_ SUM
Transient Ischemic Attack
Data ElementVariables
Nutritional and Metabolic COND43
COND43_ MISS
COND43_ UNK
COND43YY
IRONOV
IRONOV_UNK
Data ElementVariables
Ocular Problem COND25
COND25_ UNK
COND25YY
E_OC1
E_OC1_SUM
Sickle Retinopathy
Data ElementVariables
Abdominal Pain
General Pain COND27
COND27_ MISS
COND27_ UNK
COND28
COND28_ UNK
COND28YY
COND29
FUNPR_ PHYFP7
PAINCR_ PAINNOW
PAINCR_ PAINWK
PAINPR_ PAINNOW
PAINPR_ PAINWK
SF36_SFQ7
Headache HEAD1
HEAD2
HEAD3
HEADACH
HEADACH_ UNK
Management E_PN3
E_PN3_SUM
EPISNO_C
H_PN3
H_PN3_SUM
PAINNO
PAINVIS
PAINVIS_UNK
SCPAINY_C
Pain Attack
Skeletal and Joint Pain COND22
COND22_ UNK
COND22YY
E_MU2
E_MU2_SUM
H_MU2
H_MU2_SUM
Data ElementVariables
Birth Outcome FULLB_C
LIVEB_C
Gestational Age
Menstruation
Pregnancy ABORT_C
CURPREG
CURPREG_ UNK
EVPREG
EVPREG_ UNK
FPATNA
LIVEC_C
MISSCAR_C
PREGPY
PREMB_C
Reproductive Behavior
Data ElementVariables
Acute Chest Syndrome COND29_ UNK
COND29YY
E_PUL1
E_PUL1_SUM
H_PUL1
H_PUL1_SUM
Asthma
Lung Disease COND30
COND30_ UNK
COND30YY
COND31
COND31_ UNK
COND31YY
COND32
COND32_ UNK
COND33
COND33_ UNK
COND33YY
COND34
COND34_ UNK
COND34YY
E_LDPF
E_LDPF_SUM
E_PUL4
E_PUL4_SUM
E_PUL6
E_PUL6_SUM
H_PUL6
H_PUL6_SUM
LDPF
LDPF_UNK
LDPFYY
Other Respiratory Problem
Data ElementVariables
Skin Problem H_MU3
H_MU3_SUM
Data ElementVariables
Sleep Problem FATIGCR_ SLEEP1
FATIGCR_ SLEEP2
FATIGCR_ SLEEP3
FATIGCR_ SLEEP4
FATIGCR_ SLEEP5
FATIGCR_ SLEEP6
FATIGPR_ SLEEP1
FATIGPR_ SLEEP2
FATIGPR_ SLEEP3
FATIGPR_ SLEEP4
FATIGPR_ SLEEP5
FATIGPR_ SLEEP6
FUNPR_ EMOFP4
Data ElementVariables
Cardiovascular
Digestive CHOL
CHOL_UNK
CHOLYY
Genitourinary PLINE
PLINE_MISS
PLINE_UNK
PLINEFR
PLINEYY
RPLINE
RPLINE_UNK
RPLINFR
RPLINYY
Lymphatic SPLEN
SPLEN_UNK
SPLENYY
TONSL
TONSL_UNK
TONSLYY
Musculoskeletal HIPCO
HIPCO_UNK
HIPCOYY
HIPR
HIPR_UNK
HIPRYY
Ocular
Respiratory
Surgery History
Data ElementVariables
Address
Age AGE_ CATQOL
AGE_CAT
AGE_CAT
AGE_CAT
AGE_GROUP
AGE_GROUP
AGE_GROUP
AGECAT_HS
Ethnic Group ETHNIC
ETHNIC
ETHNIC
RACE_ ETHNIC
Gender GENDER
GENDER
GENDER
Language
National Origin
Nuclear Family SIBLNO_C
Race RACE
RACE
RACE
RACE_ ETHNIC
Data ElementVariables
Annual Income INCOMEQ
INCOMEQ_ UNK
Education HIGHGRD_R
SCHOOL
STUSTAT
Employment Status EMPLOY
Household INDGT19_R
INDLT19_R
Insurance MEDICAI
MEDICAR
NONEINS
OTHINS
PRIVATE
PSQ_FA
Marital Status
Data ElementVariables
Facility Type SCHLTH
SCHLTH_ UNK
SCTIME1_R
Provider Type
Quality of Care SFPS_PSQ6
SFPS_PSQ1
SFPS_PSQ10
SFPS_PSQ11
SFPS_PSQ12
SFPS_PSQ13
SFPS_PSQ14
SFPS_PSQ15
SFPS_PSQ16
SFPS_PSQ17
SFPS_PSQ18
SFPS_PSQ2
SFPS_PSQ3
SFPS_PSQ4
PSQ_AC
PSQ_CM
PSQ_GS
PSQ_IM
PSQ_TD
PSQ_TQ
SFPS_PSQ8
SFPS_PSQ9
Visit CHTRLAB
NUMVIS
Data ElementVariables
Country of Care
Facility Type
Quality of Care SFPS_PSQ5
SFPS_PSQ7
PHSM_ COMM1
PHSM_ COMM2
PHSM_ COMM3
PHSM_ COMM4
PHSM_ COMM5
PHSM_ EMOT1
PHSM_ EMOT2
PHSM_ EMOT3
PHSM_ EMOT4
PHSM_ INCFAM1
PHSM_ INCFAM2
PHSM_ INCFAM3
PHSM_ INCFAM4
PHSM_ SATIS1
PHSM_ SATIS2
PHSM_ SATIS3
PHSM_ SKILL1
PHSM_ SKILL2
PHSM_ SKILL3
PHSM_COMM
PHSM_EMO
PHSM_FAM
PHSM_INFO
PHSM_INFO1
PHSM_INFO2
PHSM_INFO3
PHSM_INFO4
PHSM_INFO5
PHSM_SATIS
PHSM_TECH
PHSM_TOT
Data ElementVariables
Final Diagnosis E_OTH1
E_OTH1_ SUM
GENOTYPE
H_OTH1
H_OTH1_ SUM
Hospitalization ANY_ENCNT
ANY_HOSP
TOT_NUM_ ENCNT
TOT_NUM_ HOSP
ICU
Data ElementVariables
Echocardiogram ECH2Y
ECH2Y_UNK
ECH2YRS
ECHO
ECHO_UNK
ECHORES
Data ElementVariables
Electrocardiogram (ECG) EKG
EKG_UNK
EKG2Y
EKG2Y_UNK
EKG2YRS
EKGRES
Data ElementVariables
Brain MRA
MRA_UNK
MRA2Y
MRA2Y_UNK
MRA2YRS
MRARES
MRI
MRI_UNK
MRI2Y
MRI2Y_UNK
MRI2YRS
MRIRES
Heart
Hip
Liver SQUID
SQUIDDY
SQUIRES
Data ElementVariables
Brain H_CNS5
H_CNS5_ SUM
COND13
COND13_ UNK
COND13YY
E_CNS5
E_CNS5_ SUM
TCD
TCD_UNK
TCD2Y
TCD2Y_UNK
TCD2YRS
TCDRES
Data ElementVariables
Quality of Life PDAYMIS_ MISS
PDAYMIS_C
Data ElementVariables
Cognitive Functioning FATIGCR_ COGNI_ SCORE
FATIGCR_ COGNI1
FATIGCR_ COGNI2
FATIGCR_ COGNI3
FATIGCR_ COGNI4
FATIGCR_ COGNI5
FATIGCR_ COGNI6
FATIGPR_ COGNI_ SCORE
FATIGPR_ COGNI1
FATIGPR_ COGNI2
FATIGPR_ COGNI3
FATIGPR_ COGNI4
FATIGPR_ COGNI5
FATIGPR_ COGNI6
FATIGPR_ TOTAL_ SCORE
Emotional Functioning FUNCR_ EMOFC_ SCORE
FUNCR_ EMOFC1
FUNCR_ EMOFC2
FUNCR_ EMOFC3
FUNCR_ EMOFC4
FUNCR_ EMOFC5
FUNCR_ SOCFC1
FUNCR_ SOCFC2
FUNCR_ SOCFC3
FUNCR_ SOCFC4
FUNCR_ SOCFC5
FUNPR_ EMOFP_ SCORE
FUNPR_ EMOFP1
FUNPR_ EMOFP2
FUNPR_ EMOFP3
FUNPR_ EMOFP5
SF36_MCS
SF36_N_ MENT
SF36_N_EMO
SF36_SFQ5A
SF36_SFQ5B
SF36_SFQ5C
SF36_SFQ9A
SF36_SFQ9B
SF36_SFQ9C
SF36_SFQ9D
SF36_SFQ9E
SF36_SFQ9F
SF36_SFQ9G
SF36_SFQ9H
SF36_SFQ9I
T_EMO
T_MENT
Physical Functioning FATIGCR_ GEN_SCORE
FATIGCR_ GEN1
FATIGCR_ GEN2
FATIGCR_ GEN3
FATIGCR_ GEN4
FATIGCR_ GEN5
FATIGCR_ GEN6
FATIGCR_ SLEEP_ SCORE
FATIGCR_ TOTAL_ SCORE
FATIGPR_ GEN_SCORE
FATIGPR_ GEN1
FATIGPR_ GEN2
FATIGPR_ GEN3
FATIGPR_ GEN4
FATIGPR_ GEN5
FATIGPR_ GEN6
FATIGPR_ SLEEP_ SCORE
FUNCR_ PHYCS
FUNCR_ PHYFC_ SCORE
FUNCR_ PHYFC1
FUNCR_ PHYFC2
FUNCR_ PHYFC3
FUNCR_ PHYFC4
FUNCR_ PHYFC5
FUNCR_ PHYFC6
FUNCR_ PHYFC7
FUNCR_ PHYFC8
FUNPR_ PHYFP_ SCORE
FUNPR_ PHYFP1
FUNPR_ PHYFP2
FUNPR_ PHYFP3
FUNPR_ PHYFP4
FUNPR_ PHYFP5
FUNPR_ PHYFP6
FUNPR_ PHYFP8
SF36_ SFQ11A
SF36_ SFQ11B
SF36_ SFQ11C
SF36_ SFQ11D
SF36_N_ ROLE
SF36_N_ VITAL
SF36_N_PAIN
SF36_N_PHY
SF36_PCS
SF36_SFQ3A
SF36_SFQ3B
SF36_SFQ3C
SF36_SFQ3D
SF36_SFQ3E
SF36_SFQ3F
SF36_SFQ3G
SF36_SFQ3H
SF36_SFQ3I
SF36_SFQ3J
SF36_SFQ4A
SF36_SFQ4B
SF36_SFQ4C
SF36_SFQ4D
SF36_SFQ8
T_PAIN
T_PHY
T_ROLE
T_VITAL
School Functioning FUNCR_ SCHFC_ SCORE
FUNCR_ SCHFC1
FUNCR_ SCHFC2
FUNCR_ SCHFC3
FUNCR_ SCHFC4
FUNCR_ SCHFC5
FUNPR_ SCHFP_ SCORE
FUNPR_ SCHFP1
FUNPR_ SCHFP2
FUNPR_ SCHFP3
FUNPR_ SCHFP4
FUNPR_ SCHFP5
FUNPR_ SFUNP1
FUNPR_ SFUNP2
FUNPR_ SFUNP3
Social Functioning FUNCR_ SOCFC_ SCORE
FUNPR_ SOCFP_ SCORE
FUNPR_ SOCFP1
FUNPR_ SOCFP2
FUNPR_ SOCFP3
FUNPR_ SOCFP4
FUNPR_ SOCFP5
SF36_N_SOC
SF36_SFQ10
T_SOC
Data ElementVariables
SCD Impact DAYMISS_C
FUNCR_ TOTAL_ SCORE
FUNPR_ TOTAL_ SCORE
PSYSOCC_ SCORE
PSYSOCP_ SCORE
SCD Management
Data ElementVariables
Biopsy LIVER
LIVRES
Data ElementVariables
Blood Differential Test
Blood Gases
Blood Smear
Blood Typing RBCD
RBCDOC
RBCDOC_ UNK
RBCFYA
RBCFYB
RBCJKA
RBCJKB
RBCLC
RBCLE
RBCLEA
RBCLEB
RBCLK
RBCM
RBCOTH
RBCUC
RBCUE
RBCUK
RBCUNK
RBCWARM
Coagulation Test
Complete Blood Count HGBRS
PLATECM
PLATERS
WBCRS
Comprehensive Metabolic Panel (CMP)
Enzyme
General
Hemoglobin Electrophoresis GENOTYPE
GENOTYPE
Iron FERRES
FERRIT
Data ElementVariables
Abdomen
Anthropometrics HT_R
HTUNIT
WT_R
WTUNIT
Cardiovascular
Extremities
General
Liver
Reproductive
Respiratory
Spleen
Vital signs
Data ElementVariables
Pulmonary Function Test PFT
PFT_UNK
PFT2Y
PFT2Y_UNK
PFT2YRS
PFTRES
Respiratory Test
Data ElementVariables
Antibiotics PROPH
PROPH_UNK
PROPPR
PROPPR_ UNK
Asthma
Blood Medication History ANTISIC
ANTISIC_UNK
ANTISPR
ANTISPR_ UNK
DESFER
DESFER_ UNK
DESFPR
DESFPR_ UNK
IRON_ OTHER_UNK
IRON_OTHER
IRONPR
IRONPR_UNK
IRONTH
IRONTH_ TYPE
Cardiovascular
Compliance
Current Medication
Depression Medication History ANTIDEP
ANTIDEP_ UNK
ANTIDPR
ANTIDPR_ UNK
Hydroxyurea HYDROPR
HYDROPR_ UNK
HYDROX
HYDROX_ UNK
Medication ALTER
ALTER_UNK
ALTPR
ALTPR_UNK
Neurologic Medication History ANTICONV
ANTICONV_ UNK
ANTICPR
ANTICPR_ UNK
Pain NARCO
NARCO_UNK
NARCPR
NARCPR_ UNK
SCD Medication
Sildenafil
Supplements
Data ElementVariables
Blood Transfusion E_TRAN2
E_TRAN2_ SUM
H_TRAN2
H_TRAN2_ SUM
TRAN
TRAN_NUM_ R
TRAN_UNK
TRANNO
TRANPHX
TRANPR
TRANPR_ UNK
TRANS
TRANS_UNK
Chronic Transfusion
Transfusion Complications H_TRAN1
H_TRAN1_ SUM
Data ElementVariables
Oxygen OXYGEN
OXYGEN_ UNK
OXYGPR
OXYGPR_ UNK
Treatment
Data ElementVariables
ASCQ-Me Quality of Care (QOC)
Patient Satisfaction Questionnaire (PSQ) SFPS_PSQ1
SFPS_PSQ10
SFPS_PSQ11
SFPS_PSQ12
SFPS_PSQ13
SFPS_PSQ14
SFPS_PSQ15
SFPS_PSQ16
SFPS_PSQ17
SFPS_PSQ18
SFPS_PSQ2
SFPS_PSQ3
SFPS_PSQ4
SFPS_PSQ5
SFPS_PSQ6
SFPS_PSQ7
SFPS_PSQ8
SFPS_PSQ9
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)
Pediatric Quality of Life Inventory Parent Report for Child (ages 13-18)
Pediatric Quality of Life Inventory Parent Report for Child (ages 8-12)
PROMIS Self-Efficacy for Managing Medications and Treatment
SF-36 Health Survey SF36_ SFQ11A
SF36_ SFQ11B
SF36_ SFQ11C
SF36_ SFQ11D
SF36_SFQ1
SF36_SFQ10
SF36_SFQ2
SF36_SFQ3A
SF36_SFQ3B
SF36_SFQ3C
SF36_SFQ3D
SF36_SFQ3E
SF36_SFQ3F
SF36_SFQ3G
SF36_SFQ3H
SF36_SFQ3I
SF36_SFQ3J
SF36_SFQ4A
SF36_SFQ4B
SF36_SFQ4C
SF36_SFQ4D
SF36_SFQ5A
SF36_SFQ5B
SF36_SFQ5C
SF36_SFQ6
SF36_SFQ7
SF36_SFQ8
SF36_SFQ9A
SF36_SFQ9B
SF36_SFQ9C
SF36_SFQ9D
SF36_SFQ9E
SF36_SFQ9F
SF36_SFQ9G
SF36_SFQ9H
SF36_SFQ9I
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