Harnessing Big Data’s Power and Potential
In keeping with the mission of helping hematologists conquer blood diseases worldwide, the American Society of Hematology (ASH) has announced its partnership with Prometheus Research to build and support a one-of-a-kind, comprehensive data registry that addresses the landscape of malignant and non-malignant hematologic diseases. “ASH realizes that there is a need to facilitate the sharing of high-quality clinical data for the hematology community and to provide direct data management support for disease-specific research activities,” said ASH President Kenneth Anderson, MD, in his President’s Column published in The Hematologist.
The data generated by the ASH Registry will be of enormous interest to investigators looking to test and validate research hypotheses. It will enable researchers to answer critical questions more quickly and accurately, including disease prevalence, affected populations, and key sociodemographic data.
The registry will focus initially on sickle cell disease and multiple myeloma and will expand over time to include new areas. ASH members and others who are interested in registry activities and who would like to volunteer their expertise to assist with ongoing efforts should contact ASH Registry Director Melissa Francisco, MBA, at email@example.com.
Let the ASH Agenda for Hematology Research Be Your Guide
The ASH Agenda for Hematology Research serves as a roadmap for prioritizing research support of the most promising, cross-cutting scientific themes throughout the field of hematology. The agenda is updated regularly, and ASH invites the entire hematology community to participate in this process by submitting comments and suggestions to ASH Scientific Affairs Manager Alice Kuaban, MS, for review by the ASH Committee on Scientific Affairs and the 18 scientific committees.
The most recent research priority updates are as follows:
- Precision Medicine (previously Genomic Profiling and Chemical Biology): foster better understanding of a patient’s predisposition to disease and response to therapy through specific areas of fundamental research (genomics and epigenetics); integrate genomic and epigenomic profiling into drug discovery efforts using predictive preclinical models; and host, share, and facilitate genomic data interpretation for clinical trial design and drug development
- Venous Thromboembolism (VTE): evaluate the role of antithrombotic agents in preventing VTE in high-risk populations, identify effective antithrombotic agents that do not cause bleeding, and identify biomarkers for prediction of disease
- Epigenetic Mechanisms: target malignant histone modifications and develop tools for locus-specific epigenetic reprogramming
- Stem Cell Biology and Regenerative Medicine: characterize hematopoietic stem cell biology, develop an artificial and functional hematopoietic stem cell niche that allows expansion of repopulating hematopoietic stem cells, advance “designer” hematopoietic cell products, and facilitate their large-scale production for therapeutic and diagnostic use
The ASH Agenda for Hematology Research serves as a reference resource to the entire hematology community and can be used as a resource for publications, grant applications, and other efforts. Visit hematology.org/researchagenda for more information.
Affordable Care Act Update: Efforts to Restore CSR Payments
In late October, Senators Lamar Alexander (R-TN) and Patty Murray (D-WA) introduced the Bipartisan Health Care Stabilization Act to help stabilize the insurance marketplace. The legislation would provide funding through 2019 for cost-sharing reduction (CSR) payments, which were recently cut off by the Trump Administration, and would restore funding for outreach and enrollment activities. Additionally, the legislation would expand access to catastrophic plans and would provide more flexibility to states when determining affordability of health insurance coverage. ASH recently sent a letter to all U.S. Senators in support of this legislation.
Sen. Orrin Hatch (R-UT) and Rep. Kevin Brady (R-TX) introduced competing legislation. Similar to the Alexander/Murray Act, this legislation provides funding for CSR payments through 2019, but would also eliminate the individual mandate and expand the use of health savings accounts. ASH has major concerns with the Hatch/Brady legislation as it includes provisions that could damage the marketplace, such as repealing the individual and employer mandate which would hinder access to health care.
To learn simple ways to become an advocate on this issue, visit hematology.org/advocacy.
Future Leaders in Hematology Education Attend Boot Camp
In the second year of the Medical Educators Institute (MEI), Co-Directors Marc J. Kahn, MD, MBA, and Jennifer Kesselheim, MD, MEd, continue to develop future leaders in hematology education. MEI is a “boot camp” in teaching techniques, medical education scholarship, and career development for hematologists who are new to or in the early phases of medical education careers.