High concordance of physician-attestation with manual data abstraction for sickle cell type: an ASH RC Data Hub study.

Authors

• Alexis A Thompson
• Ashima Singh
• Donna S Neuberg
• Amanda M Brandow
• Allison A King
• Sophie Lanzkron
• Emily A Semmel
• Sam Walters
• Susan Rogers
• Kathleen Torres
• William A Wood

Publication/Presentation Date

4-28-2026

Abstract

Sickle cell disease (SCD) is the most common inherited blood disorder in the United States. The American Society of Hematology Research Collaborative (ASH RC) has built an SCD Data Hub (DH) to facilitate research and quality improvement using real-world data. To our knowledge, we report here the first analyses from the DH, focusing on cohort demographics and accurate identification of SCD diagnosis type. DH sites have data use agreements with ASH RC to extract and transfer electronic health record (EHR) data at least quarterly. Principal investigators (PI) provided additional attestation of SCD diagnosis based on existing local data sources deemed sufficient by the PI. A random sample of 25 patients (per site) with a physician-attested diagnosis and at least 1 encounter in 2022 had SCD type and other variables manually abstracted by site personnel. Concordance was calculated as the percentage of cases with the same SCD type determined by the physician-attested and abstracted methods. Twenty DH sites have submitted data for 23 970 unique individuals with SCD. The median patient age was 23 years (range, birth to 75 years); 55.4% were female. Physician-attested SCD diagnosis types on 9484 patients from 13 sites were reported as HbSS (67.2%), HbSC (22.2%), HbSß0thalassemia (2.1%), HbSβ+thalassemia (6.1%), and HbS/other (2.4%). Physician-attested SCD type had 94% (233/248) concordance with manual chart abstraction. High concordance increases confidence in the validity of SCD DH data. Well-curated and transformed data on a large cohort of individuals with SCD will be leveraged to conduct observational studies and inform the design and feasibility of prospective interventional studies.

Volume

10

Issue

8

First Page

2608

Last Page

2615

ISSN

2473-9537

Published In/Presented At

Thompson, A. A., Singh, A., Neuberg, D. S., Brandow, A. M., King, A. A., Lanzkron, S., Semmel, E. A., Walters, S., Rogers, S., Torres, K., & Wood, W. A. (2026). High concordance of physician-attestation with manual data abstraction for sickle cell type: an ASH RC Data Hub study. Blood advances, 10(8), 2608–2615. https://doi.org/10.1182/bloodadvances.2025017562

Disciplines

Business Administration, Management, and Operations | Health and Medical Administration | Management Sciences and Quantitative Methods

PubMedID

41564435

Department(s)

Administration and Leadership

Document Type

Article