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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

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Data ElementVariables
ASCQ-Me Healthcare Utilization
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
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)
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 Global Health
PROMIS Global Physical Health
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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