What does it take to collect and harmonize the global data on Hodgkin lymphoma?
In the first episode of The HemOnc Pulse in 2024, the lead researchers of the Hodgkin Lymphoma International Study for Individual Care (HoLISTIC) consortium discuss the immense labor and fortitude it took to successfully launch the consortium, which includes a global team of diverse experts focused on the prognosis, epidemiology, treatment, survivorship, and health outcomes in patients with Hodgkin lymphoma.
Principal investigators Susan Parsons, MD, MRP, and Andrew Evans, DO, MBA, MSc, are joined by HoLISTIC consortium statistician Matthew Maurer, DMSc, to share the story behind harmonizing the world’s Hodgkin lymphoma data, and what the effort means for both clinicians and patients.
The reason behind the consortium was the lack of a central system to house Hodgkin lymphoma data and an increasing amount of Hodgkin lymphoma survivors, Dr. Parsons said.
“I think part of it came from initial discussions about the clinic program that I lead at Tufts … where we were seeing increasing numbers of patients who are survivors of Hodgkin lymphoma treated in the 198os, 1990s, 2000s, [and] all the way through to the current day,” she explained. “The magnitude of their accumulated health problems just was incredibly daunting, and I think there wasn’t any good central repository to say this particular patient wouldn’t be at greater risk for this type of late effects. We had in pediatric oncology very clear guidelines through the Children’s Oncology Group about how to monitor … toxicity, but none of that guidance existed for young adults and for older adults, and yet … we were seeing clinically the late effects emerging.”
Broad stakeholder engagement is key to the project’s success and needed to reflect the most accurate patient outcomes, Dr. Parsons noted.
“We have had representatives from all the major lymphoma foundations worldwide participate in the study as members of the consortium, and I think it already has and will continue to address … the need to make sure that our models are reflecting outcomes for patients,” Dr. Parsons said. “We care about five-year survival or overall survival, but there may be other outcomes that are as critical to the patient community. I think using our stakeholders to help us access those patients will be really important for our long-term success.”