Drs. Ryan Nipp and Arjun Gupta met at an American Society of Clinical Oncology (ASCO) meeting several years ago.
Gupta, now an assistant professor in the Division of Hematology, Oncology and Transplantation at University of Minnesota in Minneapolis, had a profound interest in studying the impact of pancreatic cancer on patients’ quality of life, as well as the potential value of patient-reported outcomes. These were topics of interest to Nipp, who is an oncologist and cancer outcomes researcher at Massachusetts General Hospital, as well.
“Ryan has become a close ‘e-mentor’ to me,” Gupta said. “He alerted me about an opportunity to work with PanCAN’s Patient Registry. We immediately dived in and explored the dataset.”
The Pancreatic Cancer Action Network (PanCAN) Patient Registry is a global online database created to look for patterns in treatments, side effect management and diagnostics that will lead to improved treatment options and outcomes for patients. To date, patients and caregivers from all 50 states and 28 countries have voluntarily put information in the registry, with most saying they do it to help advance research in the field.
Nipp and Gupta’s collaboration led to a poster presentation at the ASCO Quality Care Symposium in October 2020. Now, their work has been published in the journal Cancer Medicine, with several members of PanCAN’s Scientific and Medical Advisory Board team as co-authors, including Chief Science Officer Lynn Matrisian, PhD, MBA, and Chief Business Officer Sudheer Doss, PhD.
“The current manuscript covers the feasibility, usability and research potential of an online, global, patient-reported outcomes registry for people with pancreatic cancer,” Gupta said. “When looking at the research potential of the registry, we observed important differences by age and treatment site regarding patients’ symptoms and treatment patterns.”
For example, the authors found that people with pancreatic cancer who were 65 years and older experienced more feelings of hopelessness than younger patients. Those older than 65 were also more prone to constipation. Looking at sites where patients receive their treatment, the authors found that patients treated at community sites reported more treatment breaks of two weeks or longer, compared to people treated at academic sites. These insights provide important information about practices at different types of sites that treat people with pancreatic cancer.
Looking forward, Gupta and colleagues hope to continue to gather information from people living with pancreatic cancer and learn more about topics like financial toxicity (impact of high costs of drugs, tests, etc.) and logistical toxicity (challenges from navigating insurance, scheduling multiple appointments, etc.). In addition, their hope is to increase the racial and ethnic diversity of people participating in PanCAN’s Patient Registry.
“Overall, this work shows that patients are and should be natural stakeholders in any registry-building effort,” Gupta said.
He added, “And registries such as PanCAN’s can facilitate gathering patient-reported outcomes and monitoring patients worldwide, providing a valuable research database with the ultimate goal to improve patient outcomes.”