Ignite Creation Date:
2025-12-24 @ 10:09 PM
Ignite Modification Date:
2026-01-02 @ 2:55 AM
Study NCT ID:
NCT00300235
Status:
COMPLETED
Last Update Posted:
2019-02-01
First Post:
2006-03-07
Is NOT Gene Therapy:
True
Has Adverse Events:
True
Brief Title:
Priapism in Boys and Men With Sickle Cell Disease - Demographics, Characteristics and Prevalence
Sponsor:
Organization:
Raw JSON
{'hasResults': True, 'derivedSection': {'miscInfoModule': {'versionHolder': '2025-12-24'}, 'conditionBrowseModule': {'meshes': [{'id': 'D011317', 'term': 'Priapism'}, {'id': 'D000755', 'term': 'Anemia, Sickle Cell'}], 'ancestors': [{'id': 'D010409', 'term': 'Penile Diseases'}, {'id': 'D005832', 'term': 'Genital Diseases, Male'}, {'id': 'D000091662', 'term': 'Genital Diseases'}, {'id': 'D000091642', 'term': 'Urogenital Diseases'}, {'id': 'D052801', 'term': 'Male Urogenital Diseases'}, {'id': 'D000745', 'term': 'Anemia, Hemolytic, Congenital'}, {'id': 'D000743', 'term': 'Anemia, Hemolytic'}, {'id': 'D000740', 'term': 'Anemia'}, {'id': 'D006402', 'term': 'Hematologic Diseases'}, {'id': 'D006425', 'term': 'Hemic and Lymphatic Diseases'}, {'id': 'D006453', 'term': 'Hemoglobinopathies'}, {'id': 'D030342', 'term': 'Genetic Diseases, Inborn'}, {'id': 'D009358', 'term': 'Congenital, Hereditary, and Neonatal Diseases and Abnormalities'}]}}, 'resultsSection': {'moreInfoModule': {'pointOfContact': {'email': 'karen_kesler@rhoworld.com', 'phone': '919-408-8000', 'title': 'Karen Kesler, PhD', 'phoneExt': '244', 'organization': 'Rho Federal Systems Division'}, 'certainAgreement': {'piSponsorEmployee': False, 'restrictiveAgreement': False}}, 'adverseEventsModule': {'eventGroups': [{'id': 'EG000', 'title': 'Age 5-9.9 HbSS/HbSβ0', 'description': 'Subjects 5 to 9.9 yrs w/SCD diagnosis HbSS/HbSβ0', 'otherNumAtRisk': 208, 'otherNumAffected': 0, 'seriousNumAtRisk': 208, 'seriousNumAffected': 0}, {'id': 'EG001', 'title': 'Age 10-14.9 HbSS/HbSβ0', 'description': 'Subjects 10 to 14.9 ys w/SCD diagnosis HbSS/HbSβ0', 'otherNumAtRisk': 240, 'otherNumAffected': 0, 'seriousNumAtRisk': 240, 'seriousNumAffected': 0}, {'id': 'EG002', 'title': 'Age 15-24.9 HbSS/HbSβ0', 'description': 'Subjects 15 to 24.9 yrs w/SCD diagnosis HbSS/HbSβ0', 'otherNumAtRisk': 398, 'otherNumAffected': 0, 'seriousNumAtRisk': 398, 'seriousNumAffected': 0}, {'id': 'EG003', 'title': 'Age >25 HbSS/HbSβ0', 'description': 'Subjects \\> 25 yrs w/SCD diagnosis HbSS/HbSβ0', 'otherNumAtRisk': 362, 'otherNumAffected': 0, 'seriousNumAtRisk': 362, 'seriousNumAffected': 0}, {'id': 'EG004', 'title': 'Age >15 HbSC/HbSβ+', 'description': 'Subjects \\> 15 yrs w/SCD diagnosis HbSC/HbSβ+', 'otherNumAtRisk': 251, 'otherNumAffected': 0, 'seriousNumAtRisk': 251, 'seriousNumAffected': 0}], 'frequencyThreshold': '0'}, 'outcomeMeasuresModule': {'outcomeMeasures': [{'type': 'PRIMARY', 'title': 'Enumeration of the Prevalence of Priapism in Males With Sickle Cell Anemia and Sickle Beta Zero Thalassemia.', 'denoms': [{'units': 'Participants', 'counts': [{'value': '208', 'groupId': 'OG000'}, {'value': '240', 'groupId': 'OG001'}, {'value': '398', 'groupId': 'OG002'}, {'value': '362', 'groupId': 'OG003'}, {'value': '251', 'groupId': 'OG004'}]}], 'groups': [{'id': 'OG000', 'title': 'Age 5-9.9 HbSS/HbSβ0', 'description': 'Subjects 5 to 9.9 yrs w/SCD diagnosis HbSS/HbSβ0'}, {'id': 'OG001', 'title': 'Age 10-14.9 HbSS/HbSβ0', 'description': 'Subjects 10 to 14.9 ys w/SCD diagnosis HbSS/HbSβ0'}, {'id': 'OG002', 'title': 'Age 15-24.9 HbSS/HbSβ0', 'description': 'Subjects 15 to 24.9 yrs w/SCD diagnosis HbSS/HbSβ0'}, {'id': 'OG003', 'title': 'Age >25 HbSS/HbSβ0', 'description': 'Subjects \\> 25 yrs w/SCD diagnosis HbSS/HbSβ0'}, {'id': 'OG004', 'title': 'Age >15 HbSC/HbSβ+', 'description': 'Subjects \\> 15 yrs w/SCD diagnosis HbSC/HbSβ+'}], 'classes': [{'categories': [{'measurements': [{'value': '18', 'groupId': 'OG000'}, {'value': '58', 'groupId': 'OG001'}, {'value': '160', 'groupId': 'OG002'}, {'value': '189', 'groupId': 'OG003'}, {'value': '60', 'groupId': 'OG004'}]}]}], 'analyses': [{'groupIds': ['OG000'], 'paramType': 'proportion of subjects', 'ciPctValue': '95', 'paramValue': '35.2', 'ciLowerLimit': '32.5', 'ciUpperLimit': '37.9', 'groupDescription': 'This was a survey designed to estimate prevalence, no formal comparisons between age or genotype groups were performed.', 'nonInferiorityType': 'SUPERIORITY_OR_OTHER'}], 'paramType': 'NUMBER', 'timeFrame': 'At time of interview', 'description': 'Subject responded YES to survey Question "Have you ever had priapism?". By diagnosis and age group. Enumeration of the prevalence of priapism in males with sickle cell anemia and sickle beta zero thalassemia.', 'unitOfMeasure': 'participants', 'reportingStatus': 'POSTED', 'populationDescription': 'All particpants who completed survey were analyzed.', 'anticipatedPostingDate': '2009-03'}, {'type': 'SECONDARY', 'title': 'Characterization of Priapism in Males With Sickle Cell Anemia With Reference to Time of Onset, Duration of Events, Frequency of Episodes, Precipitating or Associated Activities, Treatment Modalities Used, and Outcome of Treatments', 'timeFrame': 'Cross-sectional single survey visit', 'description': 'Characterization of priapism in males with sickle cell anemia with reference to time of onset, duration of events, frequency of episodes, precipitating or associated activities, treatment modalities used, and outcome of treatments.', 'reportingStatus': 'NOT_POSTED', 'denomUnitsSelected': 'Participants'}, {'type': 'SECONDARY', 'title': 'Descriptive Comparison of the Prevalence of Priapism in Males With Sickle Cell Anemia to That Described in Older Patients With Other Sickle Hemoglobinopathies', 'timeFrame': 'Cross-sectional single survey visit', 'description': 'Descriptive comparison of the prevalence of priapism in males with sickle cell anemia to that described in older patients with other sickle hemoglobinopathies.', 'reportingStatus': 'NOT_POSTED', 'denomUnitsSelected': 'Participants'}, {'type': 'SECONDARY', 'title': 'Assessment of General Patient and Parent Understanding of Priapism as a Complication of Sickle Cell Disease Gained From Completion of Protocol', 'timeFrame': 'Cross-sectional single survey visit', 'description': 'Assessment of general patient and parent understanding of priapism as a complication of sickle cell disease gained from completion of protocol.', 'reportingStatus': 'NOT_POSTED', 'denomUnitsSelected': 'Participants'}]}, 'participantFlowModule': {'groups': [{'id': 'FG000', 'title': 'Age 5-9.9 HbSS/HbSβ0', 'description': 'Subjects 5 to 9.9 yrs w/SCD diagnosis HbSS/HbSβ0'}, {'id': 'FG001', 'title': 'Age 10-14.9 HbSS/HbSβ0', 'description': 'Subjects 10 to 14.9 ys w/SCD diagnosis HbSS/HbSβ0'}, {'id': 'FG002', 'title': 'Age 15-24.9 HbSS/HbSβ0', 'description': 'Subjects 15 to 24.9 yrs w/SCD diagnosis HbSS/HbSβ0'}, {'id': 'FG003', 'title': 'Age >25 HbSS/HbSβ0', 'description': 'Subjects \\> 25 yrs w/SCD diagnosis HbSS/HbSβ0'}, {'id': 'FG004', 'title': 'Age >15 HbSC/HbSβ+', 'description': 'Subjects \\> 15 yrs w/SCD diagnosis HbSC/HbSβ+'}], 'periods': [{'title': 'Overall Study', 'milestones': [{'type': 'STARTED', 'achievements': [{'groupId': 'FG000', 'numSubjects': '208'}, {'groupId': 'FG001', 'numSubjects': '240'}, {'groupId': 'FG002', 'numSubjects': '398'}, {'groupId': 'FG003', 'numSubjects': '362'}, {'groupId': 'FG004', 'numSubjects': '251'}]}, {'type': 'COMPLETED', 'achievements': [{'groupId': 'FG000', 'numSubjects': '208'}, {'groupId': 'FG001', 'numSubjects': '240'}, {'groupId': 'FG002', 'numSubjects': '398'}, {'groupId': 'FG003', 'numSubjects': '362'}, {'groupId': 'FG004', 'numSubjects': '251'}]}, {'type': 'NOT COMPLETED', 'achievements': [{'groupId': 'FG000', 'numSubjects': '0'}, {'groupId': 'FG001', 'numSubjects': '0'}, {'groupId': 'FG002', 'numSubjects': '0'}, {'groupId': 'FG003', 'numSubjects': '0'}, {'groupId': 'FG004', 'numSubjects': '0'}]}]}]}, 'baselineCharacteristicsModule': {'denoms': [{'units': 'Participants', 'counts': [{'value': '208', 'groupId': 'BG000'}, {'value': '240', 'groupId': 'BG001'}, {'value': '398', 'groupId': 'BG002'}, {'value': '362', 'groupId': 'BG003'}, {'value': '251', 'groupId': 'BG004'}, {'value': '1459', 'groupId': 'BG005'}]}], 'groups': [{'id': 'BG000', 'title': 'Age 5-9.9 HbSS/HbSβ0', 'description': 'Subjects 5 to 9.9 yrs w/SCD diagnosis HbSS/HbSβ0'}, {'id': 'BG001', 'title': 'Age 10-14.9 HbSS/HbSβ0', 'description': 'Subjects 10 to 14.9 ys w/SCD diagnosis HbSS/HbSβ0'}, {'id': 'BG002', 'title': 'Age 15-24.9 HbSS/HbSβ0', 'description': 'Subjects 15 to 24.9 yrs w/SCD diagnosis HbSS/HbSβ0'}, {'id': 'BG003', 'title': 'Age >25 HbSS/HbSβ0', 'description': 'Subjects \\> 25 yrs w/SCD diagnosis HbSS/HbSβ0'}, {'id': 'BG004', 'title': 'Age >15 HbSC/HbSβ+', 'description': 'Subjects \\> 15 yrs w/SCD diagnosis HbSC/HbSβ+'}, {'id': 'BG005', 'title': 'Total', 'description': 'Total of all reporting groups'}], 'measures': [{'title': 'Age, Categorical', 'classes': [{'categories': [{'title': '<=18 years', 'measurements': [{'value': '208', 'groupId': 'BG000'}, {'value': '240', 'groupId': 'BG001'}, {'value': '203', 'groupId': 'BG002'}, {'value': '0', 'groupId': 'BG003'}, {'value': '84', 'groupId': 'BG004'}, {'value': '735', 'groupId': 'BG005'}]}, {'title': 'Between 18 and 65 years', 'measurements': [{'value': '0', 'groupId': 'BG000'}, {'value': '0', 'groupId': 'BG001'}, {'value': '195', 'groupId': 'BG002'}, {'value': '361', 'groupId': 'BG003'}, {'value': '165', 'groupId': 'BG004'}, {'value': '721', 'groupId': 'BG005'}]}, {'title': '>=65 years', 'measurements': [{'value': '0', 'groupId': 'BG000'}, {'value': '0', 'groupId': 'BG001'}, {'value': '0', 'groupId': 'BG002'}, {'value': '1', 'groupId': 'BG003'}, {'value': '2', 'groupId': 'BG004'}, {'value': '3', 'groupId': 'BG005'}]}]}], 'paramType': 'COUNT_OF_PARTICIPANTS', 'unitOfMeasure': 'Participants'}, {'title': 'Age, Continuous', 'classes': [{'categories': [{'measurements': [{'value': '7.4', 'spread': '1.44', 'groupId': 'BG000'}, {'value': '12.6', 'spread': '1.46', 'groupId': 'BG001'}, {'value': '19.3', 'spread': '2.72', 'groupId': 'BG002'}, {'value': '36.0', 'spread': '8.93', 'groupId': 'BG003'}, {'value': '29.8', 'spread': '13.69', 'groupId': 'BG004'}, {'value': '22.5', 'spread': '12.65', 'groupId': 'BG005'}]}]}], 'paramType': 'MEAN', 'unitOfMeasure': 'years', 'dispersionType': 'STANDARD_DEVIATION'}, {'title': 'Sex: Female, Male', 'classes': [{'categories': [{'title': 'Female', 'measurements': [{'value': '0', 'groupId': 'BG000'}, {'value': '0', 'groupId': 'BG001'}, {'value': '0', 'groupId': 'BG002'}, {'value': '0', 'groupId': 'BG003'}, {'value': '0', 'groupId': 'BG004'}, {'value': '0', 'groupId': 'BG005'}]}, {'title': 'Male', 'measurements': [{'value': '208', 'groupId': 'BG000'}, {'value': '240', 'groupId': 'BG001'}, {'value': '398', 'groupId': 'BG002'}, {'value': '362', 'groupId': 'BG003'}, {'value': '251', 'groupId': 'BG004'}, {'value': '1459', 'groupId': 'BG005'}]}]}], 'paramType': 'COUNT_OF_PARTICIPANTS', 'unitOfMeasure': 'Participants'}, {'title': 'Region of Enrollment', 'classes': [{'title': 'United States', 'categories': [{'measurements': [{'value': '208', 'groupId': 'BG000'}, {'value': '240', 'groupId': 'BG001'}, {'value': '398', 'groupId': 'BG002'}, {'value': '362', 'groupId': 'BG003'}, {'value': '251', 'groupId': 'BG004'}, {'value': '1459.0', 'groupId': 'BG005'}]}]}], 'paramType': 'NUMBER', 'unitOfMeasure': 'participants'}]}}, 'protocolSection': {'designModule': {'studyType': 'OBSERVATIONAL', 'designInfo': {'timePerspective': 'RETROSPECTIVE', 'observationalModel': 'COHORT'}, 'enrollmentInfo': {'type': 'ACTUAL', 'count': 1464}}, 'statusModule': {'overallStatus': 'COMPLETED', 'startDateStruct': {'date': '2005-08'}, 'expandedAccessInfo': {'hasExpandedAccess': False}, 'statusVerifiedDate': '2019-01', 'completionDateStruct': {'date': '2008-03', 'type': 'ACTUAL'}, 'lastUpdateSubmitDate': '2019-01-14', 'studyFirstSubmitDate': '2006-03-07', 'resultsFirstSubmitDate': '2009-03-13', 'studyFirstSubmitQcDate': '2006-03-07', 'lastUpdatePostDateStruct': {'date': '2019-02-01', 'type': 'ACTUAL'}, 'resultsFirstSubmitQcDate': '2009-06-15', 'studyFirstPostDateStruct': {'date': '2006-03-08', 'type': 'ESTIMATED'}, 'resultsFirstPostDateStruct': {'date': '2009-08-03', 'type': 'ESTIMATED'}, 'primaryCompletionDateStruct': {'date': '2008-03', 'type': 'ACTUAL'}}, 'outcomesModule': {'primaryOutcomes': [{'measure': 'Enumeration of the Prevalence of Priapism in Males With Sickle Cell Anemia and Sickle Beta Zero Thalassemia.', 'timeFrame': 'At time of interview', 'description': 'Subject responded YES to survey Question "Have you ever had priapism?". By diagnosis and age group. Enumeration of the prevalence of priapism in males with sickle cell anemia and sickle beta zero thalassemia.'}], 'secondaryOutcomes': [{'measure': 'Characterization of Priapism in Males With Sickle Cell Anemia With Reference to Time of Onset, Duration of Events, Frequency of Episodes, Precipitating or Associated Activities, Treatment Modalities Used, and Outcome of Treatments', 'timeFrame': 'Cross-sectional single survey visit', 'description': 'Characterization of priapism in males with sickle cell anemia with reference to time of onset, duration of events, frequency of episodes, precipitating or associated activities, treatment modalities used, and outcome of treatments.'}, {'measure': 'Descriptive Comparison of the Prevalence of Priapism in Males With Sickle Cell Anemia to That Described in Older Patients With Other Sickle Hemoglobinopathies', 'timeFrame': 'Cross-sectional single survey visit', 'description': 'Descriptive comparison of the prevalence of priapism in males with sickle cell anemia to that described in older patients with other sickle hemoglobinopathies.'}, {'measure': 'Assessment of General Patient and Parent Understanding of Priapism as a Complication of Sickle Cell Disease Gained From Completion of Protocol', 'timeFrame': 'Cross-sectional single survey visit', 'description': 'Assessment of general patient and parent understanding of priapism as a complication of sickle cell disease gained from completion of protocol.'}]}, 'oversightModule': {'oversightHasDmc': True}, 'conditionsModule': {'keywords': ['Sickle Cell Anemia'], 'conditions': ['Priapism', 'Anemia, Sickle Cell']}, 'descriptionModule': {'briefSummary': 'Priapism, a prolonged erection of the penis, is a medical issue that often affects men with sickle cell disease. The purpose of this study is to collect demographic and clinical information on priapism by interviewing men with sickle cell disease.', 'detailedDescription': "Priapism is a prolonged, painful erection of the penis that lasts for more than four hours and occurs without sexual stimulation. It occurs when blood in the penis becomes trapped and is unable to drain properly. If it is not treated immediately, it can lead to scarring and permanent erectile dysfunction. Many cases of priapism are the result of sickle cell disease; approximately 42% of all adults with sickle cell disease will eventually develop priapism. Current treatments include medication, ice packs, or surgery. More research is needed to better understand the demographic and clinical characteristics of priapism. The purpose of this study is to collect information and further characterize priapism by conducting interviews with men with sickle cell disease. In turn, these findings may guide future priapism clinical trials.\n\nThis study will consist of two standardized questionnaires that will be administered to 1,650 men with sickle cell disease. Participants will complete an initial five-item questionnaire about priapism. If a participant indicates past experience with priapism on this initial questionnaire, he will be asked to complete a second questionnaire. This questionnaire will ask in-depth questions to further characterize the participant's episodes of priapism. If health issues such as drug use, harmful sexual behaviors, or impotence are identified upon reviewing the questionnaire, clinic staff will suggest care options and provide appropriate referrals to the participants. All participants will receive an educational brochure about priapism and compensation for completing the questionnaires."}, 'eligibilityModule': {'sex': 'MALE', 'stdAges': ['CHILD', 'ADULT', 'OLDER_ADULT'], 'minimumAge': '5 Years', 'samplingMethod': 'NON_PROBABILITY_SAMPLE', 'studyPopulation': 'Males receiving care in any Comprehensive Sickle Cell Center.', 'healthyVolunteers': False, 'eligibilityCriteria': 'Inclusion Criteria:\n\n* Diagnosis of sickle cell anemia or sickle beta zero thalassemia, if 5 years of age or over OR\n* Diagnosis of sickle beta plus thalassemia or sickle hemoglobin C disease, if 15 years of age or over\n* Participant and/or parent or guardian must be able to communicate adequately with the interviewer\n* May participate if currently taking hydroxyurea, undergoing chronic transfusion, or participating in other research studies, including those involving treatments such as arginine, if all other inclusion criteria are met\n\nExclusion Criteria\n\nSubjects who meet any of the following criteria are disqualified from enrollment in the study:\n\n1. Patient or parent/guardian declines participation.\n2. Female.\n3. Subject or parent/guardian unable to communicate adequately with the interviewer.'}, 'identificationModule': {'nctId': 'NCT00300235', 'briefTitle': 'Priapism in Boys and Men With Sickle Cell Disease - Demographics, Characteristics and Prevalence', 'organization': {'class': 'OTHER', 'fullName': 'University of Texas Southwestern Medical Center'}, 'officialTitle': 'The Epidemiology of Priapism (Sickle Cell Disease)', 'orgStudyIdInfo': {'id': '1319'}, 'secondaryIdInfos': [{'id': 'U54HL070587', 'link': 'https://reporter.nih.gov/quickSearch/U54HL070587', 'type': 'NIH'}]}, 'armsInterventionsModule': {'armGroups': [{'label': '1', 'description': '200 subjects ages 5 to 9.9 years with a diagnosis of HbSS/HbSβ0'}, {'label': '2', 'description': '400 subjects ages 10 to 14.9 years with a diagnosis of HbSS/HbSβ0'}, {'label': '3', 'description': '400 subjects ages 15 to 24.9 years with a diagnosis of HbSS/HbSβ0'}, {'label': '4', 'description': '400 subjects over the age of 25 with a diagnosis of HbSS/HbSβ0'}, {'label': '5', 'description': '250 subjects age 15 and older with a diagnosis of HbSC or HbSβ+'}]}, 'contactsLocationsModule': {'locations': [{'zip': '36688-0002', 'city': 'Mobile', 'state': 'Alabama', 'country': 'United States', 'facility': 'University of South Alabama', 'geoPoint': {'lat': 30.69436, 'lon': -88.04305}}, {'zip': '95616', 'city': 'Davis', 'state': 'California', 'country': 'United States', 'facility': 'University of California, Davis', 'geoPoint': {'lat': 38.54491, 'lon': -121.74052}}, {'zip': '94609', 'city': 'Oakland', 'state': 'California', 'country': 'United States', 'facility': "Children's Hospital and Research Center at Oakland & Summit Medical Center", 'geoPoint': {'lat': 37.80437, 'lon': -122.2708}}, {'zip': '94611', 'city': 'Oakland', 'state': 'California', 'country': 'United States', 'facility': 'Kaiser Permanente, Oakland', 'geoPoint': {'lat': 37.80437, 'lon': -122.2708}}, {'zip': '94143', 'city': 'San Francisco', 'state': 'California', 'country': 'United States', 'facility': 'University of California, San Francisco', 'geoPoint': {'lat': 37.77493, 'lon': -122.41942}}, {'zip': '80206', 'city': 'Denver', 'state': 'Colorado', 'country': 'United States', 'facility': 'University of Colorado Health Sciences Center', 'geoPoint': {'lat': 39.73915, 'lon': -104.9847}}, {'zip': '32610-0383', 'city': 'Gainesville', 'state': 'Florida', 'country': 'United States', 'facility': 'University of Florida', 'geoPoint': {'lat': 29.65163, 'lon': -82.32483}}, {'zip': '40202', 'city': 'Louisville', 'state': 'Kentucky', 'country': 'United States', 'facility': "Kosair Children's Hospital", 'geoPoint': {'lat': 38.25424, 'lon': -85.75941}}, {'zip': '02115', 'city': 'Boston', 'state': 'Massachusetts', 'country': 'United States', 'facility': "Brigham and Women's Hospital at Harvard Medical School", 'geoPoint': {'lat': 42.35843, 'lon': -71.05977}}, {'zip': '02115', 'city': 'Boston', 'state': 'Massachusetts', 'country': 'United States', 'facility': "Children's Hospital of Boston", 'geoPoint': {'lat': 42.35843, 'lon': -71.05977}}, {'zip': '02118', 'city': 'Boston', 'state': 'Massachusetts', 'country': 'United States', 'facility': 'Boston Medical Center', 'geoPoint': {'lat': 42.35843, 'lon': -71.05977}}, {'zip': '48202', 'city': 'Detroit', 'state': 'Michigan', 'country': 'United States', 'facility': 'Wayne State University', 'geoPoint': {'lat': 42.33143, 'lon': -83.04575}}, {'zip': '10467-2940', 'city': 'The Bronx', 'state': 'New York', 'country': 'United States', 'facility': "Children's Hospital Montefiore", 'geoPoint': {'lat': 40.84985, 'lon': -73.86641}}, {'zip': '10467', 'city': 'The Bronx', 'state': 'New York', 'country': 'United States', 'facility': "Montefiore Medical Center and Children's Hospital at Montefiore", 'geoPoint': {'lat': 40.84985, 'lon': -73.86641}}, {'zip': '27599', 'city': 'Chapel Hill', 'state': 'North Carolina', 'country': 'United States', 'facility': 'University of North Carolina at Chapel Hill', 'geoPoint': {'lat': 35.9132, 'lon': -79.05584}}, {'zip': '27710', 'city': 'Durham', 'state': 'North Carolina', 'country': 'United States', 'facility': 'Duke University Medical Center', 'geoPoint': {'lat': 35.99403, 'lon': -78.89862}}, {'zip': '45229', 'city': 'Cincinnati', 'state': 'Ohio', 'country': 'United States', 'facility': "Cincinnati Children's Hospital Medical Center", 'geoPoint': {'lat': 39.12711, 'lon': -84.51439}}, {'zip': '45267', 'city': 'Cincinnati', 'state': 'Ohio', 'country': 'United States', 'facility': 'University of Cincinnati Hospital', 'geoPoint': {'lat': 39.12711, 'lon': -84.51439}}, {'zip': '43210', 'city': 'Columbus', 'state': 'Ohio', 'country': 'United States', 'facility': 'Ohio State University', 'geoPoint': {'lat': 39.96118, 'lon': -82.99879}}, {'zip': '73104', 'city': 'Oklahoma City', 'state': 'Oklahoma', 'country': 'United States', 'facility': 'University of Oklahoma Health Sciences Center', 'geoPoint': {'lat': 35.46756, 'lon': -97.51643}}, {'zip': '19104', 'city': 'Philadelphia', 'state': 'Pennsylvania', 'country': 'United States', 'facility': "Children's Hospital of Philadelphia", 'geoPoint': {'lat': 39.95238, 'lon': -75.16362}}, {'zip': '19107', 'city': 'Philadelphia', 'state': 'Pennsylvania', 'country': 'United States', 'facility': 'Thomas Jefferson University Hospital', 'geoPoint': {'lat': 39.95238, 'lon': -75.16362}}, {'zip': '19134', 'city': 'Philadelphia', 'state': 'Pennsylvania', 'country': 'United States', 'facility': "St. Christopher's Hospital for Children", 'geoPoint': {'lat': 39.95238, 'lon': -75.16362}}, {'zip': '38105', 'city': 'Memphis', 'state': 'Tennessee', 'country': 'United States', 'facility': "St. Jude Children's Hospital", 'geoPoint': {'lat': 35.14953, 'lon': -90.04898}}, {'zip': '75390-8852', 'city': 'Dallas', 'state': 'Texas', 'country': 'United States', 'facility': 'University of Texas Parkland Health & Hospital System', 'geoPoint': {'lat': 32.78306, 'lon': -96.80667}}, {'zip': '75390', 'city': 'Dallas', 'state': 'Texas', 'country': 'United States', 'facility': "University of Texas Children's Medical Center of Dallas", 'geoPoint': {'lat': 32.78306, 'lon': -96.80667}}, {'zip': '77555', 'city': 'Galveston', 'state': 'Texas', 'country': 'United States', 'facility': 'University of Texas Medical Branch at Galveston', 'geoPoint': {'lat': 29.30135, 'lon': -94.7977}}], 'overallOfficials': [{'name': 'Samir Ballas, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'Thomas Jefferson University'}, {'name': 'Lennette Benjamin', 'role': 'STUDY_CHAIR', 'affiliation': "Montefiore Medical Center and Children's Hospital of Montefiore"}, {'name': 'J. Bessman, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'University of Texas Southwestern at Galveston'}, {'name': 'Joan Cain, MD', 'role': 'STUDY_CHAIR', 'affiliation': "UT Children's Hospital of Oklahoma"}, {'name': 'Lewis Hsu, MD', 'role': 'STUDY_CHAIR', 'affiliation': "St. Christopher's Hospital"}, {'name': 'Laura DeCastro, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'Duke University'}, {'name': 'Cage Johnson, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'University of Southern California Los Angeles County & University of Southern California Medical Center'}, {'name': 'Karen Kalinyak, MD', 'role': 'STUDY_CHAIR', 'affiliation': "Children's Hospital Medical Center, Cincinnati"}, {'name': 'Susan Lieff, PhD', 'role': 'STUDY_CHAIR', 'affiliation': 'Rho, Inc.'}, {'name': 'Lillian McMahon, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'Boston Medical Center'}, {'name': 'William Mentzer, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'University of California San Francisco Pediatric Hematology/Oncology'}, {'name': 'Ashok Raj, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'Norton Healthcare'}, {'name': 'Rupa Redding-Lallinger, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'University of North Carolina, Chapel Hill'}, {'name': 'Zora R. Rogers, MD', 'role': 'STUDY_CHAIR', 'affiliation': "University of Texas Southwestern Medical Center at Dallas and Children's Medical Center"}, {'name': 'Cynthia Rutherford, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'University of Texas, Southwestern Medical Center at Dallas'}, {'name': 'Kim Smith-Whitley, MD', 'role': 'STUDY_CHAIR', 'affiliation': "Children's Hospital of Philadelphia"}, {'name': 'Elliott Vichinsky, MD', 'role': 'STUDY_CHAIR', 'affiliation': "Children's Hospital and Research Center at Oakland & Summit Medical Center"}, {'name': 'Winfred Wang, MD', 'role': 'STUDY_CHAIR', 'affiliation': "St. Jude Children's Research Hospital"}, {'name': 'Richard Snyder, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'University of Cincinnati'}, {'name': 'Kathryn Hassell, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'University of Colorado, Denver'}, {'name': 'Matthew Heeney, MD', 'role': 'STUDY_CHAIR', 'affiliation': "Boston Children's Hospital"}, {'name': 'Eric Kraut, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'Ohio State University'}, {'name': 'Stacy Month, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'Kaiser Permanente - Oakland'}, {'name': 'Maureen Okam, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'Dana-Farber Cancer Institute'}, {'name': 'Courtney Thornburg, MD', 'role': 'STUDY_CHAIR', 'affiliation': 'Duke University'}]}, 'ipdSharingStatementModule': {'ipdSharing': 'UNDECIDED', 'description': 'Data still in analysis with NO FUNDING and all on paper from closure of contracted SDMC'}, 'sponsorCollaboratorsModule': {'leadSponsor': {'name': 'University of Texas Southwestern Medical Center', 'class': 'OTHER'}, 'collaborators': [{'name': 'National Heart, Lung, and Blood Institute (NHLBI)', 'class': 'NIH'}], 'responsibleParty': {'type': 'PRINCIPAL_INVESTIGATOR', 'investigatorTitle': 'Professor of Pediatrics', 'investigatorFullName': 'Zora R. Rogers', 'investigatorAffiliation': 'University of Texas Southwestern Medical Center'}}}}