HoLISTIC (Hodgkin Lymphoma International Study for Individual Care) is an international consortium coalescing a team of diverse experts from across the world to study the salient aspects of Hodgkin lymphoma prognosis, epidemiology, treatment, survivorship, and health outcomes across all age groups. The consortium consists of 70+ investigators, patients, and representatives from the lymphoma advocacy community. Investigators include pediatric and adult oncologists, radiation oncologists, nuclear medicine and PET imaging experts, biology scientists, decision-making scientists, cancer statisticians, and cancer epidemiologists.
Our goal is to enhance decision support and promote personalized medicine for Hodgkin lymphoma patients across all disease states and stages, given expanding treatment options, and in the absence of complete acute and long-term data. To accomplish this, we sought to unify and harness worldwide, multi-source data to define acute, post-acute, and long-term outcomes for individual Hodgkin lymphoma patients. We have harmonized individual patient data (IPD) from more than 15 contemporary Hodgkin lymphoma clinical trials together with multiple large “real world” institutional and regional cancer registries across North America, Europe, and Australia. Applying rigorous data science methods, we created a common data model with a detailed data dictionary. IPD were normalized, standardized, and harmonized, resulting in the creation of a comprehensive, annotated master database of more than 15,000 patients with newly-diagnosed Hodgkin lymphoma.
We are leveraging these data to establish clinical decision models for short-term disease outcomes and projecting longer-term estimates for absolute risk(s) of post-acute and late effects, and impacts on health-related quality of life for individual patients. We have intentionally constructed the dataset and the associated models to allow for the dynamic incorporation of new studies and data as they emerge over time, including studies with new targeted therapeutic agents as well as the integration of post-baseline factors such as interim imaging and biology.
Altogether, HoLISTIC represents a highly collaborative global initiative geared towards harmonizing the world’s data to facilitate robust, evidence-based clinical decision-support models that are interactive and freely available to guide individual patients and clinicians at the time of initial diagnosis, relapse, and in survivorship care, and also to serve as a strong basis for future decision-making projects and health outcomes analyses.