In the July/August issue’s President’s column, Dr. Kenneth Anderson highlighted the need to facilitate the sharing of research-grade data for ASH members and the hematology community. To that end, ASH has committed to developing its own data registry. We are excited to share with you ASH’s vision for a registry.
Medicine is generating an unprecedented amount of information that could transform clinical care and yield new insights into the mechanisms of disease. In recent years, we have witnessed the development and growth of professional society–driven registries designed around the needs of their specialty and their membership. While existing registries tend to focus on a specific disease or set of diseases, to date there has not been a centralized effort that addresses the landscape of malignant and nonmalignant hematologic diseases.
Rare diseases present unique needs, and research-focused registries offer a solution for sharing knowledge through collaboration. A single point of access for relevant information will serve as a vehicle for building a comprehensive knowledge base for rare hematologic diseases. Employing this valuable asset will enable researchers to more quickly and accurately answer critical questions, including disease prevalence, affected populations, and key sociodemographic data.
ASH has the ability to play a vital role in facilitating the exchange of information on hematologic diseases. As a trusted convener, ASH stands apart as the neutral party most suited to supporting collaboration and coordination of efforts. As a trusted professional society, ASH is best positioned to serve as the honest broker of knowledge supporting new discoveries, treatment breakthroughs, and novel approaches to treating patients with blood disorders worldwide. Accordingly, we are pleased to announce ASH’s commitment to develop the ASH Registry.
ASH’s registry is envisioned as a mission-driven, ground-breaking initiative that will harness the power of big data to conquer blood diseases worldwide. Through the registry, ASH will initiate a shared information resource to advance collaborative hematologic research around the globe. This approach ensures the ability to meet research needs as a primary capability, leading to opportunities to repurpose registry data to meet a variety of future needs. The data generated by the ASH Registry is anticipated to be of enormous interest to ASH members, particularly investigators looking to test and validate research hypotheses. As the registry expands and matures over time, we see additional opportunities to benefit additional audiences.
The Registry will initially focus on Sickle Cell Disease and Multiple Myeloma. These two diseases were selected based on existing scientific priorities as well as ongoing activities related to ASH’s scientific research agenda. For sickle cell disease, a current gap in longitudinal research resources exists, creating the need for a resource to track patients from birth through adulthood. Further, there is a great potential for new therapies supported by longitudinal study. For multiple myeloma, there are several approved agents and therapeutics under development that would benefit from longitudinal study. Though initially focused on these two diseases, the registry will expand over time to include new areas of focus.
The Registry is currently engaged in early development activities and is focused on building the core structure necessary to support a research tool of this magnitude. One of ASH’s unique resources is its one-of-a-kind global community of members who bring content expertise to the study and management of hematologic diseases. The ASH Registry will harness this extraordinary resource by engaging ASH membership at every step along the development and implementation process.
An initial registry oversight group has been developed to provide overall strategic guidance to the registry. Under the guidance of this group, processes and procedures related to governance, data use, regulatory concerns, analyses, publications, and other considerations have been or are being developed. The Registry data collection infrastructure is being constructed, and initial participants for the first two diseases are being solicited.
As we progress, we are eager to hear from ASH members and others who are interested in registry activities and who would like to volunteer their expertise to assist with ongoing efforts. We are looking for individuals with expertise in key areas, including data science and health information technology. If you are interested in finding out more about volunteer opportunities for the registry, please contact us at registry@hematology.org.
