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Study Detail

Study ID 1010
Name South Carolina Sickle Cell Disease Access to Care Pilot Program
Contact Email Alan.Anderson@prismahealth.org
Acronym (SC)2
Period ongoing
Design Registry Study
Study PI Julie Kanter
Institution Medical University of South Carolina
URL https://medicine.musc.edu/departments/pediatrics/research/sickle-cell-research
CTGovID NA
Funding Agency Doris Duke
Overview (SC)2 is designed to use collective impact methodology to harness the current efforts of the sickle cell disease (SCD) stakeholders to create disease-specific medical homes for individuals living with SCD in South Carolina.The goals are to enhance access to care for affected individuals, educate local providers to develop knowledge and self-efficacy in treating and managing SCD, and improve cost of care through increased quality of care.
Focus Areas 1. Enhanced access to disease modifying medication
2. Improving transfusion utilization
3. Increased evidence based screening and preventative care
4. Acute care utilization
Outcomes 1. Longitudinal biologic data collection including demographics, radiologic assessments, anthropomorphic and laboratory values to improve the understanding of sickle cell disease and the relationship of the environment on patient health and well-being.
2. Acute care information and prescription refill history will be collected in order to improve individual patients’ disease management and provide population health information for patients with sickle cell disease in South Carolina. This data will also be utilized for quality assessment of the (SC)² program and for quality improvement activities.
3. We will collect patient reported outcomes including previously validated pain reporting and quality of life tools to ensure patient satisfaction and input in the (SC)² program.
4. Utilize the ECHO model to improve the quality and quantity of knowledge of providers in providing care for individuals with sickle cell disease.
5. Each patient will receive a customized individual care plan including pain medication plan available to all treating providers to enhance patient-specific treatment.
Data Location MUSC
Biospecimen Available Blood; DNA; Plasma; Serum; Urine;
Data Consent Patients will consent to the acquisition of data for statistical assessment and for permission to share individualized treatment protocols with outside providers for continuity of care.
Biospecimen Consent The patients will be asked if they are willing to participate in an optional Bio-Repository. There is no maximal amount of time in which samples can be stored but individuals consenting for the biorepository can opt for withdrawal at any time.
Contact Consent Yes, with permission on consent
Genomic Data No
Age Range 0-99
No. Subjects 500
Inclusion Criteria 1. Potential subjects will be identified either from patients already seen at MUSC or who are referred to MUSC Pediatric Hematology/Oncology for treatment of sickle cell disease.
2. Patients included will be those of all ages with a diagnosis of sickle cell disease.
3. The majority of individuals living with sickle cell disease in South Carolina are African-American with limited exceptions which are why the targeted enrollment is almost entirely black/African-American. Children (<12 years of age) will be included since they also have sickle cell disease (parental consent will be required for children <18 with assent from the patients >12 years of age.
Exclusion Criteria No patients will be excluded due to co-morbidities. Only patients unable to consent who do not have a designated care-giver will be excluded.
Data ElementVariables
Acute Anemic Episode
Aplastic Crisis
Bleeding
Other Blood Problem
Sickle Cell Disease diagnosis
dx_age_1a2ca3
scd_phenotype
scd_phenotype_other
Data ElementVariables
Aneurysm
Cardiac Failure mr_scd_q52_1
mr_scd_q52_date
scd_q52_1
scd_q52_2
scd_q52_3
Cardiovascular Problem mr_scd_q57_1
mr_scd_q57_date
mr_scd_q57b_1
mr_scd_q57b_date
scd_q57_1
scd_q57_2
scd_q57_3
scd_q57b_1
scd_q57b_2
scd_q57b_3
Heart Problem
Data ElementVariables
Gastrointestinal Problem mr_scd_q55_1
mr_scd_q55_date
scd_q55_1
scd_q55_2
scd_q55_3
Hepatitis
Liver Problem
Data ElementVariables
Diabetes Mellitus mr_scd_q67_1
mr_scd_q67_date
scd_q67_1
scd_q67_2
scd_q67_3
Endocrine Problem
Data ElementVariables
Genitourinary Problem
Kidney Problem
Priapism mr_scd_q48_1
mr_scd_q48_date
scd_q48_1
scd_q48_2
scd_q48_3
Renal Dialysis History
Data ElementVariables
Fever
HIV Infection
Immune Problem mr_scd_q58_1
mr_scd_q58_date
scd_q58_1
scd_q58_2
scd_q58_3
Infection mr_scd_q62_1
mr_scd_q62_3
mr_scd_q62_date
scd_q62_1
scd_q62_2
scd_q62_3
scd_q62_4
Vaccination
Data ElementVariables
Sarcoidosis mr_scd_q61_1
mr_scd_q61_date
scd_q61_1
scd_q61_2
scd_q61_3
Spleen Problem mr_scd_q56_1
mr_scd_q56_date
mr_scd_q56a_1
mr_scd_q56a_date
mr_scd_q56b_1
mr_scd_q56b_date
mr_scd_q56c_1
mr_scd_q56c_date
scd_q56_1
scd_q56_2
scd_q56_3
scd_q56a_1
scd_q56a_2
scd_q56a_3
scd_q56b_1
scd_q56b_2
scd_q56b_3
scd_q56c_1
scd_q56c_2
scd_q56c_3
Data ElementVariables
Musculoskeletal Problem
Osteomyelitis mr_scd_q45_1
mr_scd_q45_date
scd_q45_1
scd_q45_2
scd_q45_3
Osteonecrosis mr_scd_q43_1
mr_scd_q43_date
scd_q43_1
scd_q43_2
scd_q43_3
Rheumatic Diseases mr_scd_q59_1
mr_scd_q59_date
mr_scd_q60_1
mr_scd_q60_date
scd_q59_1
scd_q59_2
scd_q59_3
scd_q60_1
scd_q60_2
scd_q60_3
Data ElementVariables
Meningitis
Neurologic Event
Seizure
Stroke mr_scd_q49_1
mr_scd_q49_date
mr_scd_q49a_1
mr_scd_q49a_date
mr_scd_q49b_1
mr_scd_q49b_date
mr_scd_q49d_1
mr_scd_q49d_date
scd_q49_1
scd_q49_2
scd_q49_3
scd_q49a_1
scd_q49a_2
scd_q49a_3
scd_q49b_1
scd_q49b_2
scd_q49b_3
scd_q49d_1
scd_q49d_2
scd_q49d_3
Transient Ischemic Attack mr_scd_q49c_1
mr_scd_q49c_date
scd_q49c_1
scd_q49c_2
scd_q49c_3
Data ElementVariables
Nutritional and Metabolic mr_scd_q68_1
mr_scd_q68_date
scd_q68_1
scd_q68_2
scd_q68_3
Data ElementVariables
Ocular Problem
Sickle Retinopathy mr_scd_q66_1
mr_scd_q66_date
scd_q66_1
scd_q66_2
scd_q66_3
Data ElementVariables
Abdominal Pain
General Pain
Headache
Management freq_pain_ed
freq_pain_hosp
qualityofcareadults_emergencyroom_doctorsnurses_believepain_past12months
qualityofcareadults_emergencyroom_doctorsnurses_helppain_past12months
qualityofcareadults_emergencyroom_painattackcrisis_past12months
qualityofcareadults_emergencyroom_wait_paintreated_past12months
qualityofcareadults_painattackcrisis_manage_home_past12months
Pain Attack freq_pain_home
freq_pain_home_days
freq_pain_home_epi
pain_interference_1
pain_interference_2
pain_interference_3
pain_interference_4
Skeletal and Joint Pain mr_scd_q44_1
mr_scd_q44_date
scd_q44_1
scd_q44_2
scd_q44_3
Data ElementVariables
Acute Chest Syndrome mr_scd_q53_1
mr_scd_q53_date
scd_q53_1
scd_q53_2
scd_q53_3
Asthma mr_scd_q54_1
mr_scd_q54_date
scd_q54_1
scd_q54_2
scd_q54_3
Lung Disease mr_scd_q51_1
mr_scd_q51_date
mr_scd_q57a_1
mr_scd_q57a_date
scd_q51_1
scd_q51_2
scd_q51_3
scd_q57a_1
scd_q57a_2
scd_q57a_3
Other Respiratory Problem mr_scd_q64_1
mr_scd_q64_date
scd_q64_1
scd_q64_2
scd_q64_3
Data ElementVariables
Skin Problem mr_scd_q65_1
mr_scd_q65_date
scd_q65_1
scd_q65_2
scd_q65_3
Data ElementVariables
Cardiovascular
Digestive
Genitourinary
Lymphatic mr_scd_q56d_1
mr_scd_q56d_date
scd_q56d_1
scd_q56d_2
scd_q56d_3
Musculoskeletal
Ocular
Respiratory
Surgery History
Data ElementVariables
Address
Age age
age_coded
birthdate
birthdate_coded
Ethnic Group ethnicity_self_id
ethnicity_self_id_ancestry
Gender gender
Language language_health_material
language_to_provider
National Origin
Nuclear Family
Race ptethicity
Data ElementVariables
Annual Income annual_income
Education household_edu_attainment
self_edu_attainment
Employment Status cur_employ_stat_other
current_employment_status
Household
Insurance health_insurance
medicaid_state
mr_scd_q74_1
mr_scd_q74_2
scd_q74_1
scd_q74_2
scd_q75_1
state_plan
state_plan_name
Marital Status martial_status
Data ElementVariables
Facility Type med_er
mr_med_er
mr_med_er_12
mr_med_er_13
mr_med_er_14
mr_med_er_15
mr_med_er_16
mr_med_er_17
mr_med_er_18
mr_med_er_19
mr_med_er_20
q14a
q14b
Provider Type
Quality of Care qualityofcareadults_emergencyroom_clerksreceptionists_courtesyrespect_past12months
qualityofcareadults_emergencyroom_oftencare_soonwanted_past12months
qualityofcareadults_emergencyroom_oftendoctors_care_past12months
qualityofcareadults_emergencyroom_oftennurses_care_past12months
qualityofcareadults_emergencyroom_oftensatisfied_care_past12months
qualityofcareadults_emergencyroom_rightaway_past12months
Visit
Data ElementVariables
Country of Care
Quality of Care qualityofcareadults_bad_experiences_emergencyroom
qualityofcareadults_courtesyrespect_doctornurse_usuallysee_past12months
qualityofcareadults_doctor_appointment_past12months
qualityofcareadults_doctornurse_usuallysee
qualityofcareadults_doctornurse_usuallysee_knowaffects_personally
qualityofcareadults_doctornurse_usuallysee_treatlot_patients
qualityofcareadults_emergencyroom_delayavoidcare_past12months
qualityofcareadults_enoughtime_doctornurse_usuallysee_past12months
qualityofcareadults_explainthings_doctornurse_usuallysee_past12months
qualityofcareadults_frequency_get_appointment_past12months
qualityofcareadults_health_insurance_avoid_care
qualityofcareadults_listencarefully_doctornurse_usuallysee_past12months
qualityofcareadults_ratingcare_received_past12months
qualityofcareadults_satisfiedcare_doctornurse_usuallysee_past12months
qualityofcareadults_satisfiedcarereceived_appointment_past12months
qualityofcareadults_visits_doctornurse_usuallysee_past12months
Data ElementVariables
Final Diagnosis
Hospitalization med_hospital
med_hospital_day
mr_med_hospital
mr_med_hospital_12
mr_med_hospital_13
mr_med_hospital_14
mr_med_hospital_15
mr_med_hospital_16
mr_med_hospital_17
mr_med_hospital_18
mr_med_hospital_19
mr_med_hospital_20
mr_med_hospital_day
mr_med_hospital_day_12
mr_med_hospital_day_13
mr_med_hospital_day_14
mr_med_hospital_day_15
mr_med_hospital_day_16
mr_med_hospital_day_17
mr_med_hospital_day_18
mr_med_hospital_day_19
mr_med_hospital_day_20
ICU med_icu
mr_med_icu
mr_med_icu_12
mr_med_icu_13
mr_med_icu_14
mr_med_icu_15
mr_med_icu_16
mr_med_icu_17
mr_med_icu_18
mr_med_icu_19
mr_med_icu_20
Data ElementVariables
Cognitive Functioning
Emotional Functioning efficacy_6
efficacy_9
Physical Functioning efficacy_2
efficacy_5
School Functioning
Social Functioning
Data ElementVariables
SCD Impact
SCD Management effica2y_3
efficacy_1
efficacy_4
efficacy_7
efficacy_8
Data ElementVariables
Blood Differential Test lab_available10
lab_available11
lab_available12
lab_available13
Blood Gases
Blood Smear
Blood Typing
Coagulation Test
Complete Blood Count lab_available1
lab_available2
lab_available3
lab_available4
lab_available5
lab_available6
lab_available7
lab_available8
lab_available9
lab1
lab10
lab11
lab12
lab13a
lab13b
lab2
lab3
lab4
lab5
lab6
lab7
lab8
lab9
Comprehensive Metabolic Panel (CMP) lab_available14
lab_available15
lab_available27
lab_available28
lab_available29
lab_available30
lab_available31
lab_available32
lab_available33
lab_available36
lab_available41
lab_available42
lab14
lab15
lab27
lab28
lab29
lab30
lab31
lab32
lab33
lab34
lab36
lab40
lab41
lab42
Enzyme lab_available34
General
Hemoglobin Electrophoresis alpha_test
dx_basis
dx_confirm
lab_available50
lab_available51
lab50a
lab50b
lab50c
lab50d
lab50e
lab50f
lab50g
lab51a
lab51b
lab51c
lab51d
lab51e
lab51f
lab51g
Iron lab_available40
Data ElementVariables
Genitourinary Test
Urine Test lab_available43
lab_available45
lab_available48
lab_available49
lab_date43
lab_date45
lab_date48
lab_date49
lab43
lab45
lab48
lab49
Data ElementVariables
Eye exam mr_eye_date
mr_eye_exam
mr_eye_result
Data ElementVariables
Abdomen
Anthropometrics mr_weight
mr_weight_date
weight
weight_date
Cardiovascular
Extremities
General
Liver
Reproductive
Respiratory
Spleen
Vital signs bp_date
bp_diastolic
bp_systolic
heart_date
heart_rate
hypertensive_meds
mr_bp_date
mr_bp_diastolic
mr_bp_systolic
mr_heart_date
mr_heart_rate
mr_hypertensive_meds
mr_spo2
mr_spo2_date
spo2
spo2_date
Data ElementVariables
Antibiotics
Asthma
Blood Medication History
Cardiovascular
Compliance
Current Medication
Depression Medication History
Hydroxyurea hydory_dose
hydrox_stop
hydroxy_decline
hydroxy_decline_other
hydroxy_past
hydroxy_stop_other
hydroxy_usage_date
hydroxy_use
Medication med_17
med_18
med_19
med_20
med_21
med25
mr_med_17
mr_med_18
mr_med_19
mr_med_20
mr_med_21
mr_med25
Neurologic Medication History
Pain
SCD Medication
Sildenafil
Supplements
Data ElementVariables
Blood Transfusion med_transfusions
mr_med_transfusions
mr_med_transfusions_12
mr_med_transfusions_13
mr_med_transfusions_14
mr_med_transfusions_15
mr_med_transfusions_16
mr_med_transfusions_17
mr_med_transfusions_18
mr_med_transfusions_19
mr_med_transfusions_20
Chronic Transfusion
Transfusion Complications current_reaction_sym_other
current_reaction_symptoms
med_transfusion_reaction
mr_current_reaction_sym_other
mr_current_reaction_symptoms
mr_med_transfusion_reaction
Data ElementVariables
ASCQ-Me Pain Episode
ASCQ-Me Pain Impact
Brief Pain Inventory (BPI)
PROMIS Neuropathic Pain Quality
PROMIS Nociceptive Pain Quality
PROMIS Pain Interference pain_interference_1
pain_interference_2
pain_interference_3
pain_interference_4
Data ElementVariables
ASCQ-Me Quality of Care (QOC) qualityofcareadults_bad_experiences_emergencyroom
qualityofcareadults_courtesyrespect_doctornurse_usuallysee_past12months
qualityofcareadults_doctor_appointment_past12months
qualityofcareadults_doctornurse_usuallysee
qualityofcareadults_doctornurse_usuallysee_knowaffects_personally
qualityofcareadults_doctornurse_usuallysee_treatlot_patients
qualityofcareadults_emergencyroom_clerksreceptionists_courtesyrespect_past12months
qualityofcareadults_emergencyroom_delayavoidcare_past12months
qualityofcareadults_emergencyroom_doctorsnurses_believepain_past12months
qualityofcareadults_emergencyroom_doctorsnurses_helppain_past12months
qualityofcareadults_emergencyroom_oftencare_soonwanted_past12months
qualityofcareadults_emergencyroom_oftendoctors_care_past12months
qualityofcareadults_emergencyroom_oftennurses_care_past12months
qualityofcareadults_emergencyroom_oftensatisfied_care_past12months
qualityofcareadults_emergencyroom_painattackcrisis_past12months
qualityofcareadults_emergencyroom_rightaway_past12months
qualityofcareadults_emergencyroom_wait_paintreated_past12months
qualityofcareadults_enoughtime_doctornurse_usuallysee_past12months
qualityofcareadults_explainthings_doctornurse_usuallysee_past12months
qualityofcareadults_frequency_get_appointment_past12months
qualityofcareadults_health_insurance_avoid_care
qualityofcareadults_listencarefully_doctornurse_usuallysee_past12months
qualityofcareadults_painattackcrisis_manage_home_past12months
qualityofcareadults_ratingcare_received_past12months
qualityofcareadults_satisfiedcare_doctornurse_usuallysee_past12months
qualityofcareadults_satisfiedcarereceived_appointment_past12months
qualityofcareadults_visits_doctornurse_usuallysee_past12months
Patient Satisfaction Questionnaire (PSQ)
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