When will we have new treatments for pancreatitis? In July, Mission: Cure met with researchers and doctors to discuss this important question. Mission: Cure CEO Megan Golden, VP for Translational Research Lola Rahib, and the summer interns attended PancreasFest 2022 at the University of Pittsburgh. PancreasFest is an annual conference that brings together researchers who treat pancreatic diseases. These experts want to make life better for pancreatitis patients.
Planning Clinical Trials to Test New Pancreatitis Treatments, Listening to Patients, and Mission: Cure’s Taking the Lead
Pancreatitis Clinical Trials Workshop
A day-long workshop hosted by the NIH was dedicated to moving clinical trials forward. In her talk at the workshop, Mission: Cure CEO Megan Golden called on researchers to seek patient feedback at every step of clinical trial development.
At this workshop, experts discussed next steps needed for clinical trials to treat pancreatitis. Representatives from the Food and Drug Administration (also known as the “FDA”) and NIH joined leading clinical researchers, the National Pancreas Foundation and Mission: Cure in the conversation. People from the FDA emphasized that for a new pancreatitis treatment to be approved, it must affect “how patients feel, function or survive.” Experts in clinical trials for pain drugs shared ways that pain has been accurately measured in pain trials. Participants saw that pain can be measured reliably and learned about how clinical trials should consider several dimensions of pain, including how it interferes with a patient’s life.
Experts, including people at the FDA, are increasingly prioritizing patients’ needs in their clinical trials work.
Multiple speakers cited Mission: Cure’s 2018 patient survey, which revealed the most important symptoms to patients are pain, nausea/digestive problems and fatigue. Speakers recognized that clinical trials need to be designed around these needs and seek patient input at all steps of designing clinical trials. This growing focus on patients represents major progress since Megan attended Pancreas in 2019.
Our team at PancreasFest 2022! From left: Lola, Caroline, Megan, Lara, Spencer, Gabby. Not pictured: Shekinah.
“There are people who have dedicated their entire lives to finding new pancreatitis treatments. We are getting close. Stay tuned for more information.”Jessica GibsonCEO, Ariel Precision Medicine
“Our culture is to use patients to analyze outcomes. Shouldn’t we use outcomes to analyze the patients?” – Dr. Robert Dworkin, NIDDK Meeting Keynote Speaker, Professor of Anesthesiology, Neurology, Oncology, and Psychiatry and in the Center for Human Experimental Therapeutics, Director of the Anesthesiology Clinical Research Center, University of Rochester School of Medicine and Dentistry.
Mission: Cure Presentation
Mission: Cure was invited to present at this NIH workshop. Megan shared what Mission: Cure is already doing to speed therapies to patients and challenged the participants to change the way they involve patient organizations.
We’re lucky enough to be a part of larger movement with Chan-Zuckerberg Initiativethe Chan-Zuckerberg Initiative, where many other patient organizations are also taking the lead in working with researchers. Learning from our peer, Mission: Cure is using similar strategies. Several researchers approached us at the conference to say that they want to partner with us to accelerate patient-focused clinical trials, and Mission: Cure is excited for action.
About the Author:
Caroline Saksena was a non-profit management and policy intern at Mission: Cure in Summer 2022. She studies biology and neuroscience in the class of 2023 at Carleton College and aspires to improve healthcare through a career in medical research and public health.