Sickle Cell Disease Research Network

Facilitating Sickle Cell Disease Research to Improve Clinical Outcomes

Transforming Sickle Cell Disease

Together, we can improve the quality of life for individuals affected by sickle cell disease (SCD). The Data Hub, as a centralized data source, is improving access to quality clinical data. The ASH Research Collaborative® is working with the SCD community to remove barriers to research participation and quality improvement. The goal is to make research faster and more impactful.

Sickle Cell Disease Program Sites

The Data Hub Sickle Cell Disease Program includes prominent sickle cell disease research institutions and medical centers in the United States.

Transforming Sickle Cell Disease
  • Boston Medical Center, Boston, MA
  • Children’s Hospital of Philadelphia, Philadelphia, PA
  • Montefiore Medical Center, Bronx, NY
  • Newark Beth Israel Medical Center, Newark, NJ
  • NYC Health & Hospitals/Harlem Hospital, New York, NY
  • NYC Health & Hospitals/Jacobi Medical Center, Bronx, NY
  • NYC Health & Hospitals/Kings County Hospital, Brooklyn, NY
  • NYC Health & Hospitals/Lincoln Hospital, Bronx, NY
  • NYC Health & Hospitals/North Central Bronx Hospital, Bronx, NY
  • NYC Health & Hospitals/Queens Hospital, Queens, NY
  • University of Connecticut Health, Farmington, CT

Data Captured

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The Data Hub uses clinical concepts and data elements for electronic health record codes that align with the most recent United States Core Data for Interoperability (USCDI) standards. This minimizes the data collection burden for participating sites, as all certified electronic health record vendors, providers, and payers are already required to make these elements available for data exchange.

These USCDI entities are included in collaborating sites’ data submissions:

  • Allergies & Intolerances – All allergies and intolerances in the medical record
  • Assessment and Plan of Treatment – Assessments and plans of treatment back to 2015 for initial transmission, and then all new assessments and plans of treatment moving forward
  • Care Team Member(s) – All care team information back to 2015 for initial transmission, and then all new care team information moving forward
  • Clinical Notes – All clinical notes back to 2015 for initial transmission, and then all new notes moving forward
  • Goals – All goals back to 2015 for initial transmission, and then all new goals moving forward
  • Health Concerns – All health concerns back to 2015 for initial transmission, and then all new health concerns moving forward
  • Immunizations – All immunizations in the medical record for each patient
  • Laboratory – All labs back to 2015 for initial transmission, and then all lab medications tests moving forward
  • Medications – All medications back to 2015 for initial transmission, and then all new medications moving forward
  • Patient Demographics – All data for historical records and for each new record moving forward
  • Problems – All problems (resolved and unresolved) in the medical record for each patient
  • Procedures – All procedures in the medical record for each patient
  • Smoking Status – All smoking status information in the medical record
  • Vital Signs – All vital signs back to 2015 for initial transmission, and then all new vital signs moving forward

We aim to make submission easy through our data submission pathways and models.

Sickle Cell Disease Site Portal Preview

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Participating sites have access to their own confidential Data Hub Site Portal.

Site Portal tools include:

  • Cohort Finder
  • Data Export Engine
  • Data Quality Report
  • Data Submissions Tracker
  • Disease-Specific Dashboard
  • User Management
Sickle Cell Disease Site Portal

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Near real-time observational summaries are available on the disease-specific Dashboard. Sites can track their own patients, analyze outcomes, and identify ways to improve the quality of care provided to those living with SCD.

The disease-specific Dashboard presents metrics across seven clinical categories that are most valuable for SCD researchers and clinicians to track.

These metrics were established by the Data Hub’s SCD Subcommittee through an iterative process informed by clinicians, regulators, payers, health technology experts, biotech companies, the U.S. Food and Drug Administration and the National Heart, Lung, and Blood Institute.

Below are the clinical categories:

  • Acute Care Events
  • Cerebrovascular
  • Other Sequelae
  • Patient Characteristics
  • Pharmacotherapy
  • Renal
  • Transfusion

View the metrics that sites can track on the Disease-Specific Dashboard.

Have Questions?

For more Data Hub information, please visit the following pages: