Metadata Catalog
Natural History Data Resource

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Release History

Version Highlight Notes
December 18, 2024.
V6.1 		Added data element curation of one study: Adult Sickle Cell Quality of Life Measurement Information System Field Test
  • Added data element curation of ASCQ-Me
September 30, 2024.
V6.0 		Added data element curation of two studies: CIP: Differential Response to Hydroxyurea and Incidence of Stroke in Sickle Cell Disease and NextGen Consortium: Globin Gene Expression in Sickle Cell Genotype-Specific iPS Cells
  • Added study-level data from CIP
  • Added study-level data from GE-SCD-iPS
  • Added study-level data from ASCQ-Me
  • Added data element curation of two studies: CIP and GE-SCD-iPS
July 26, 2024.
V5.9 		Added data element curation of two studies: Comprehensive Sickle Cell Centers' (CSCC) - HU-Mg and Comprehensive Sickle Cell Centers' (CSCC) -Neuropsych
June 7, 2024.
V5.8 		Added data element curation of one study: Comprehensive Sickle Cell Centers' (CSCC) -Arginine Supplementation in Sickle Cell Anemia: Physiological and Prophylactic Effects
  • Added metadata on four study forms from Comprehensive Sickle Cell Centers' (CSCC) -Arginine Supplementation in Sickle Cell Anemia: Physiological and Prophylactic Effects.
April 29, 2024.
V5.7 		Added study-level metadata from one study. Added data element curation of one study: Sickle Cell Disease Implementation Consortium (SCDIC) Registry
  • Added study-level data from Sickle Cell Disease Implementation Consortium (SCDIC) Registry
  • Added metadata on four study forms from Sickle Cell Disease Implementation Consortium (SCDIC) Registry
March 28, 2024.
V5.6 		Added data element curation of one study: Sickle Cell Disease Implementation Consortium (SCDIC) Registry
  • Added metadata on two study forms from Sickle Cell Disease Implementation Consortium (SCDIC) Registry
February 28, 2024.
V5.5 		Added data element curation of one study: Comprehensive Sickle Cell Centers' (CSCC) -Priapism
  • Added metadata on three study forms from Comprehensive Sickle Cell Centers' (CSCC) -Priapism (CSCC-Priapism)
January 30, 2024.
V5.4 		Added data element curation of one study: Comprehensive Sickle Cell Centers' (CSCC) -Dexamethasone
  • Added metadata on six study forms from Comprehensive Sickle Cell Centers' (CSCC) -Dexamethasone (CSCC-Dexamethasone)
December 14, 2023.
V5.3 		Added data element curation of one study: Comprehensive Sickle Cell Centers' (CSCC) -Dexamethasone
  • Added metadata on four study forms from Comprehensive Sickle Cell Centers' (CSCC) -Dexamethasone (CSCC-Dexamethasone)
October 25, 2023.
V5.2 		Added data element curation of one study: Comprehensive Sickle Cell Centers' (CSCC) -Dexamethasone
  • Added metadata on three study forms from Comprehensive Sickle Cell Centers' (CSCC) -Dexamethasone (CSCC-Dexamethasone)
  • Added grant information to the “Study Details” page
September 22. 2023.
V5.1 		Added data element curation of one study: Comprehensive Sickle Cell Centers' (CSCC) -Dexamethasone
  • Added metadata on eleven study forms from Comprehensive Sickle Cell Centers' (CSCC) -Dexamethasone (CSCC-Dexamethasone)
August 31, 2023.
V5.0 		Added data element curation of one study: Comprehensive Sickle Cell Centers' (CSCC) -Dexamethasone
  • Added metadata on eight study forms from Comprehensive Sickle Cell Centers' (CSCC) -Dexamethasone (CSCC-Dexamethasone)
July 30, 2023.
V4.9 		Added data element curation of one study: Improving ED Care Using Individualized Pain Plans (SCDIC ALIGN)
  • Added metadata on six study forms from Improving ED Care Using Individualized Pain Plans (SCDIC ALIGN)
June 30, 2023.
V4.8 		Added data element curation of one study: Improving ED Care Using Individualized Pain Plans (SCDIC ALIGN)
  • Added metadata on three study forms from Improving ED Care Using Individualized Pain Plans (SCDIC ALIGN)
May 31, 2023.
V4.7 		New study summary graph. Updates to the Subject Frequency Tool. Added data element curation for one study: Integrating m-Health into SCD Care to Increase Hydroxyurea Utilization (SCDIC mESH).
  • New study summary graph showing number of subjects across studies.
  • Updates to key characteristics in the Participant Frequency Tool.
  • Added metadata on ten study forms from Integrating m-Health into SCD Care to Increase Hydroxyurea Utilization (SCDIC mESH).
April 28, 2023.
V4.6 		Updates to the Subject Frequency Tool. Added data element curation for one study: Integrating m-Health into SCD Care to Increase Hydroxyurea Utilization (SCDIC mESH).
  • Updates to key characteristics in the Subject Frequency Tool.
  • Added metadata on two study forms from Integrating m-Health into SCD Care to Increase Hydroxyurea Utilization (SCDIC mESH).
March 31, 2023.
V4.5 		Added one study (Walk-PHaSST) to the subject Frequency Tool
February 28, 2023.
V4.4 		Added one study (CSSCD) to the subject Frequency Tool. Added study metadata from two study
January 31, 2023.
V4.3 		Added data element curation for one study: Blood and Marrow Transplant Clinical Trials Network (BMT CTN). Added one study (BMT CTN) to the Subject Frequency Tool.
  • Added metadata on ten study forms from Blood and Marrow Transplant Clinical Trials Network (BMT CTN)
  • Added Blood and Marrow Transplant Clinical Trials Network (BMT CTN) to the Subject Frequency Tool
  • Added a “Publication” page under “About”
December 20, 2022.
V4.2 		Added data element curation for one study: Blood and Marrow Transplant Clinical Trials Network (BMT CTN). Added one study (STOP) to the Subject Frequency Tool.
  • Added metadata on six study forms from Blood and Marrow Transplant Clinical Trials Network (BMT CTN)
  • Added one study (STOP I and II) to the Subject Frequency Tool
November 30, 2022.
V4.1 		Added data element curation for one study: Blood and Marrow Transplant Clinical Trials Network (BMT CTN). Added one study (MSH) to the Subject Frequency Tool.
  • Added metadata on four study forms from Blood and Marrow Transplant Clinical Trials Network (BMT CTN)
  • Added one study (MSH) to the Subject Frequency Tool
October 31, 2022.
V4.0 		Added data element curation for one study: Blood and Marrow Transplant Clinical Trials Network (BMT CTN). Added two studies (BABY HUG, HCT for SCD) to the Subject Frequency Tool.
  • Added metadata on three study forms from Blood and Marrow Transplant Clinical Trials Network (BMT CTN) Unrelated Donor Reduced Intensity Bone Marrow Transplant for Children With Severe Sickle Cell Disease (0601) (BMT CTN - UD HCT for cSCD-0601)
  • Added subject frequencies for Key Characteristics and Data Elements from the BABY HUG and HCT for SCD studies
September 30, 2022.
V3.9 		Added new feature for Subject Frequency Tool to allow users to filter available studies by data collected for data elements to identify the number of subjects in each study.
  • Added new feature for Subject Frequency Tool to allow users to filter available studies by data collected for data elements to identify the number of subjects in each study.
August 19, 2022.
V3.8 		Added data element curation for one study: Hydroxyurea to Prevent Organ Damage in Children With Sickle Cell Anemia (Baby HUG)
  • Added data element curation for one study form: Hydroxyurea to Prevent Organ Damage in Children With Sickle Cell Anemia (Baby HUG)
July 27, 2022.
V3.7 		Added data element curation for one study: Hydroxyurea to Prevent Organ Damage in Children With Sickle Cell Anemia (Baby HUG).
  • Added metadata on four study forms from Hydroxyurea to Prevent Organ Damage in Children With Sickle Cell Anemia (Baby HUG).
June 30, 2022.
V3.6 		Data element conceptual hierarchy enhancement. Added data element curation for one study: Hydroxyurea to Prevent Organ Damage in Children With Sickle Cell Anemia (Baby HUG).
  • Added metadata on eighteen study forms from Hydroxyurea to Prevent Organ Damage in Children With Sickle Cell Anemia (Baby HUG).
  • Enhanced Data element conceptual hierarchy to maximize study inclusion.
  • Added a new metadata field “Genomic Data” to the Browse Studies page.
April 29, 2022.
V3.5 		New Data Frequency Tool. Added data element curation for two existing studies: Hydroxyurea to Prevent Organ Damage in Children With Sickle Cell Anemia (Baby HUG) and Comprehensive Sickle Cell Centers' (CSCC) C-Data Project.
  • Added Subject Frequency Tool to allow users to filter available studies by key population characteristics to identify the number of subjects in each study.
  • Added metadata on nine study forms from Hydroxyurea to Prevent Organ Damage in Children With Sickle Cell Anemia (Baby HUG).
  • Added metadata on two study forms from Comprehensive Sickle Cell Centers' (CSCC) C-Data Project (C-Data).
March 31, 2022.
V3.4 		Added data element curation for two new studies: Hydroxyurea to Prevent Organ Damage in Children With Sickle Cell Anemia (Baby HUG) and Comprehensive Sickle Cell Centers' (CSCC) C-Data Project.
  • Added metadata on three study forms from Hydroxyurea to Prevent Organ Damage in Children With Sickle Cell Anemia (Baby HUG)
  • Added metadata on one study form from Comprehensive Sickle Cell Centers' (CSCC) C-Data Project (C-Data)
February 23, 2022.
V3.3 		Added data element curation for one new study: Hydroxyurea to Prevent Organ Damage in Children With Sickle Cell Anemia (Baby HUG)
  • Added metadata on two study forms from Hydroxyurea to Prevent Organ Damage in Children With Sickle Cell Anemia (Baby HUG).
January 31, 2022.
V3.2 		New Study Publications feature. Update to Reports. Added data element curation for two new studies: Boston Brazil SCD and Multicenter Study of Hydroxyurea in Patients with Sickle Cell Anemia (MSH).
  • Feature- Added Publications tab under Study Detail.
  • Updated format of Reports.
  • Added metadata on one study form from Boston Brazil SCD (Boston Brazil SCD)
  • Added metadata on 21study forms from Multicenter Study of Hydroxyurea in Patients with Sickle Cell Anemia (MSH).
December 17, 2021.
V3.1 		Added data element curation for one new study: Multicenter Study of Hydroxyurea in Patients with Sickle Cell Anemia (MSH).
  • Added metadata on fifteen study forms from Multicenter Study of Hydroxyurea in Patients with Sickle Cell Anemia (MSH).
October 29, 2021.
V3.0 		Updated data element curation for one existing study: Cooperative Study of Sickle Cell Disease (CSSCD)
  • Added metadata on eleven study forms from Cooperative Study of Sickle Cell Disease (CSSCD)
September 30, 2021.
V2.9 		Added study-level metadata for four new studies. Added new domain. Updated data element curation for one existing study: Cooperative Study of Sickle Cell Disease (CSSCD).
  • Added study-level metadata for four new studies:
    • Boston Brazil SCD (Boston Brazil SCD)
    • Hydroxyurea to Prevent Organ Damage in Children With Sickle Cell Anemia (Baby HUG)
    • Blood and Marrow Transplant Clinical Trials Network (BMT CTN) Unrelated Donor Reduced Intensity Bone Marrow Transplant for Children With Severe Sickle Cell Disease (0601) (BMT CTN - UD HCT for cSCD-0601)
    • Comprehensive Sickle Cell Centers' (CSCC) C-Data Project (C-Data)
  • Added one new metadata domain: Social Determinants of Health (SDOH).
  • Added metadata on twelve study forms from Cooperative Study of Sickle Cell Disease (CSSCD).
August 31, 2021.
V2.8 		Updated data element curation for one existing study: Cooperative Study of Sickle Cell Disease (CSSCD).
  • Added metadata on fourteen study forms from Cooperative Study of Sickle Cell Disease (CSSCD)
July 30, 2021.
V2.7 		New feature to search PROM and PROM report. Updated data element curation for one existing study: Cooperative Study of Sickle Cell Disease (CSSCD).
  • Added a “Report by PRO measure” summary page under “Report”
  • Added “PRO measure” under “Search – Select a Concept Category”
  • Added metadata on four study forms from Cooperative Study of Sickle Cell Disease (CSSCD).
June 30, 2021.
V2.6 		Updated data element curation for one existing study: Cooperative Study of Sickle Cell Disease (CSSCD)
  • Added metadata on ten study forms from Cooperative Study of Sickle Cell Disease (CSSCD).
April 30, 2021.
V2.5 		New feature to browse PROM, Additional data element curation for Cooperative Study of Sickle Cell Disease (CSSCD). Added one study doc from HCT for SCD. Added new data element domains.
  • Added metadata on six study forms from Cooperative Study of Sickle Cell Disease (CSSCD).
  • Updated one study doc from HCT for SCD (HCT for SCD).
  • Added two new metadata domains: Parent/Caretaker, Quality of Life
  • Feature – added filter to browse studies by PRO measure.
February 26, 2021.
V2.4 		Updated data element curation for one existing study: Cooperative Study of Sickle Cell Disease (CSSCD)
  • Added metadata on two study forms from Cooperative Study of Sickle Cell Disease (CSSCD)
January 29, 2021.
V2.3 		Updated data element curation for one existing study: Cooperative Study of Sickle Cell Disease (CSSCD).
  • Added metadata on eight study forms from Cooperative Study of Sickle Cell Disease (CSSCD).
December 18, 2020.
V2.2 		Added data element curation from four new TOPMed studies: Outcome Modifying Genes in Sickle Cell Disease (OMG-SCD), The Pharmacogenomics of Hydroxyurea in Sickle Cell Disease (PharmHU), Recipient Epidemiology and Donor Evaluation Study (REDS-BSCDC), and Howard University Center for Sickle Cell Disease Study (PUSH-SCD).
  • Added metadata on one study form from Outcome Modifying Genes in Sickle Cell Disease (OMG-SCD).
  • Added metadata on one study form from The Pharmacogenomics of Hydroxyurea in Sickle Cell Disease (PharmHU).
  • Added metadata on one study form from Recipient Epidemiology and Donor Evaluation Study (REDS-BSCDC).
  • Added metadata on one study form from Howard University Center for Sickle Cell Disease Study (PUSH-SCD).
October 30, 2020.
V2.1 		Added data element curation from one new study: Multicenter Study of Hydroxyurea in Patients with Sickle Cell Anemia (MSH). Updated curation for one existing study: Center for International Blood & Marrow Transplant Research (CIBMTR).
  • Added metadata on two study forms from Multicenter Study of Hydroxyurea in Patients with Sickle Cell Anemia (MSH).
  • Added metadata on three study forms from Center for International Blood & Marrow Transplant Research (CIBMTR).
September 30, 2020.
V2.0 		Added data element curation from two new studies: SCDAA - Get Connected Registry, and Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE).
  • Added metadata on four study forms from SCDAA - Get Connected Registry (SCDAA)
  • Added metadata on fifteen study forms from Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE)
August 31, 2020.
V1.9 		Added data element curation from a new study, South Carolina Sickle Cell Disease Access to Care Pilot Program; and a new homepage design with summary pie charts
  • Added a new homepage design with summary pie charts
  • Added metadata from a new study, South Carolina Sickle Cell Disease Access to Care Pilot Program (SC2)
July 30, 2020.
V1.8 		Added study-level metadata for five new studies, and 35 study forms from Stroke Prevention in Sickle Cell Anemia (STOP I and II)
  • Added study-level metadata for five new studies:
    • Stroke Prevention in Sickle Cell Anemia (STOP I and II)
    • Multicenter Study of Hydroxyurea in Patients With Sickle Cell Anemia (MSH)
    • South Carolina Sickle Cell Disease Access to Care Pilot Program ((SC)2)
    • SCDAA - Get Connected Registry (SCDAA)
    • Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE)
  • Added metadata on 35 study forms from Stroke Prevention in Sickle Cell Anemia (STOP I and II)
June 30, 2020.
V1.7 		Added metadata on twenty one study forms from Treatment of Pulmonary Hypertension and Sickle Cell Disease With Sildenafil Therapy (walk-PHaSST)
  • Added metadata on twenty one study forms from Treatment of Pulmonary Hypertension and Sickle Cell Disease With Sildenafil Therapy (walk-PHaSST)
  • Added a new “About” page
  • Study information organized in five topic areas
May 4, 2020.
V1.6 		Addition of "Age Range" and “Number of Subjects” to the Study Detail page
  • Added "Age Range" and "Number of Subjects" to the Study Detail page
  • Added examples to the Search page
  • Revised concept categories, sub-categories, and data elements
  • Added additional forms for Treatment of Pulmonary Hypertension and Sickle Cell Disease With Sildenafil Therapy (walk-PHaSST)
April 15, 2020.
V1.5 		Addition of new study, new forms, and a new domain
  • Added one new study: Treatment of Pulmonary Hypertension and Sickle Cell Disease With Sildenafil Therapy (walk-PHaSST)
  • Added metadata on five study forms from Cooperative Study of Sickle Cell Disease
  • Added metadata on nine study forms from Treatment of Pulmonary Hypertension and Sickle Cell Disease With Sildenafil Therapy (walk-PHaSST)
  • Added one new metadata domain: Pain
  • Feature – added Form link at the study variable level
  • Feature – added Use Statistics page
March 26, 2020.
V1.4 		Addition of Study Forms
  • Added Study Forms to the Study Detail page
February 19, 2020.
V1.3 		Addition of new domains and study metadata
December 12, 2019.
V1.2 		One new study and Search enhancements
  • Added metadata from one study (SIT Trial)
  • Added "Contact" form in the menu bar
  • On the expanded filter view, enhanced left panel style for better viewing experience
November 6, 2019.
V1.1 		One new study and website enhancements
  • Added metadata from one study (SIT Trial)
  • Added "Contact" form in the menu bar
  • On the expanded filter view, enhanced left panel style for better viewing experience
November 1, 2019.
V1.0 		Initial release for the CureSC Metadata Catalog. Contains study-level metadata from three studies (CIBMTR, SCDIC, SCCRIP) and a small sample data element from CSSCD.
  • Browse feature to view study summary information, data elements, and study by data element
  • Search feature to search study-level metadata by domain and keyword
  • Summary report of study variables by domain