The ASH Research Collaborative is being developed to provide a robust patient-level data collection platform for large cohorts of individuals with sickle cell disease and multiple myeloma, expanding to other hematological conditions in the future.
The ASH Research Collaborative is being designed with input gathered from patients, clinicians, researchers, industry, and government representatives.
The ASH Research Collaborative is a nonprofit organization established through the American Society of Hematology's commitment to patients with hematologic conditions and the science that informs clinical care and future therapies. The ASH Research Collaborative houses two major initiatives: 1) the Data Hub and 2) the Clinical Trials Network (CTN). The Data Hub is a program for hematologic diseases in which networks of clinical care delivery sites are developed in specific disease areas, with individual patient data contributed through electronic health record (EHR) integration, direct data entry through electronic data capture, and external data sources. Disease-specific data models are constructed so that data can be assembled into analytic datasets and used to enhance clinical care through dashboards and other mechanisms. Initial models have been built in multiple myeloma and sickle cell disease using the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) and Fast Healthcare Interoperability Resources (FHIR) standards. The Data Hub also provides a framework for the development of disease-specific Learning Communities and the testing of healthcare delivery strategies. The ASH Research Collaborative CTN is a clinical trials accelerator that creates efficiencies in the execution of multicenter clinical trials and has been initially developed for sickle cell disease. Both components are operational, with the Data Hub actively aggregating source data and the CTN reviewing study candidates. This manuscript describes processes involved in developing core features of the ASH Research Collaborative to inform the stakeholder community in preparation for expansion to additional disease areas.