Crohn’s disease is a lifelong chronic inflammatory condition that is marked by unexpected flares and painful complications, which require time-consuming and complex care coordination and may cause significant emotional burden.
Helmsley has made Crohn’s disease management a priority, including initiatives aimed at improving access to care. Patients deserve easily accessible, high-quality care that is built on informed, collaborative decision-making with their providers. Our goal is to ensure that any individual living with and managing the disease can access care anytime, from anywhere in the world. Our research shows low provider awareness of Crohn’s disease and of inflammatory bowel disease in general. Crohn’s disease is poorly understood by many general healthcare providers, and many parts of the world lack access to specialists who can appropriately diagnose, treat and manage it. This shortage forces patients to either travel great distances for care or to accept substandard treatment locally.
Even before the COVID-19 pandemic accelerated the use of telemedicine, Helmsley had supported the expanded use of these technologies, including virtual clinics, as a way to connect Crohn’s disease patients with providers. These efforts are designed to provide immediate relief for people living with and managing Crohn’s disease while also improving their long-term quality of life.
Much of our work also centers on funding innovative monitoring devices and technologies that help Crohn’s disease patients offset traditional gaps in their health care. One challenge facing patients is the inability to predict disease flares.
This wireless device is being studied in Helmsley-supported research to understand whether wearable and wireless health tracking devices can reliably predict disease flares, which would allow preventative measures to be taken before a flare develops
Prediction tools for flares do not yet exist but are urgently needed. As such, we support research into wearable and wireless monitoring prediction tools and digital apps that integrate innate physiological measures with patients’ stress measurements, sleep patterns, diet and other variables. Through tracking their individualized health patterns, patients may glean insights to better understand when flares may occur. This data could enable providers to intervene earlier, potentially preventing irreversible complications.
Importantly, Helmsley is supporting studies to better quantify the global burden of Crohn’s disease. This is both to help guide our own investments and provide the increased understanding needed to strengthen health systems and support patients. While historically the prevalence of Crohn’s disease has been greatest in industrialized countries, incidence is on the rise in developing and newly industrialized regions. The more clearly we can see where Crohn’s disease is increasing in incidence, the better health systems can prepare. This will need to include ensuring access to specialists who can provide the kind of care that enhances quality of life for Crohn’s disease patients.
IBD and Crohn’s disease are increasing across India, particularly in Hyderabad where we’ve supported expansion of diagnostic, treatment and disease management services at the Asian Institute of Gastroenterology, the largest such hospital in the world, serving 10,000 people daily. Helmsley’s grant aims to support Crohn’s disease patients living in extreme poverty in India”
Dr. Rupa Banerjee leads a team of medical professionals focused on diagnosing and treating Crohn’s disease at the Asian Institute of Gastroenterology. With Helmsley support, they now provide diagnostics (including colonoscopy), treatment, and care in rural villages outside of Hyderabad.
All of our initiatives are designed to minimize the burden of managing a difficult, lifelong disease. While we seek to find a cure for Crohn’s disease, we are simultaneously dedicated to improving patients’ lives today. By investing in access to care, monitoring and technologies, and having a greater understanding of the global burden of Crohn’s disease, our commitment to Crohn’s disease patients remains steadfast.
Based at the University of Calgary, Dr. Gil Kaplan is a leader in establishing the global burden of digestive diseases, and translating this knowledge into improving care for patients living with inflammatory bowel disease (IBD). His recent work has defined the changing pattern of IBD across the four epidemiological stages of its evolution, and Helmsley’s current grant to the University of Calgary supports creating an up-to-date epidemiologic profile of Crohn’s disease (CD) in the Western World, and a 2030 projection of CD globally.
