Mission: Cure Gathers Insights From First Pancreatitis Patient Survey
Patients Say There is a Huge Need for Better Understanding from Medical Professionals
NEW YORK, July 25, 2018 (Newswire.com) - Mission: Cure, a growing nonprofit committed to finding a cure and improving the quality of life for children and adults dealing with chronic pancreatitis and other pancreatic disease, launched its first patient survey to gain real-world patient perspectives on living with the disease. Although the survey is ongoing and patients can still complete the survey, Mission: Cure plans on sharing some preliminary survey insights at the PancreasFest conference in Pittsburgh, PA this week. This patient survey is in tune with an FDA draft guidance issued just last month on "Patient-Focused Drug Development" and came at a pivotal time in a transforming US healthcare system in which patients are beginning to take the driver’s seat in directing care.
The survey, phrased as an open dialogue with the FDA, asks patients to shed light on their symptoms and current treatment plan and to describe the aspects of the disease they find most difficult to live with. Initial analysis reveals three recurrent themes: a huge lack of understanding of pancreatitis from medical professionals, a lack of available treatments and burdensome symptoms that place a large toll on daily life.
Putting patients at the forefront of decision making has the potential to unify researchers, drug developers, and government officials with a streamlined goal of improving patient outcomes.
With rare, stigmatized diseases like pancreatitis, patient perspectives are often neglected. We want the patients' voices to be heard and this survey is just the beginning. As we continue to connect with and understand the patient perspective at a deeper level, we will be able to guide the industry to make meaningful choices that will have a direct impact on patients.
On the organization’s progress, Co-director Linda Martin said, “With rare, stigmatized diseases like pancreatitis, patient perspectives are often neglected. We want the patients’ voices to be heard, and this survey is just the beginning. As we continue to connect with and understand the patient perspective at a deeper level, we will be able to guide the industry to make meaningful choices that will have a direct impact on patients.”
Mission: Cure will release a report detailing more insights gathered from the survey in the coming weeks.
About Mission: Cure
Mission: Cure was founded in 2017 as a nonprofit organization to discover life-altering therapies and bring them to patients. Mission: Cure aims to demonstrate a new, faster model for curing diseases using innovative financing based on patient outcomes. The first disease they are focusing on is chronic pancreatitis. For specific information about pancreatitis or Mission: Cure venture philanthropy opportunities, please visit www.mission-cure.org.
For all inquiries: Linda Martin, firstname.lastname@example.org, 239-297-9377, @Mission_Cure
Source: Mission: Cure