To follow up on Patrick’s (@Patrick_Ryan) excellent 2019 wrap up presentation, I would like to propose the “big impact” network research study for 2020 focused on inflammatory bowel disease (IBD), which includes ulcerative colitis (UC) and Crohn’s disease.
After one of my close family members has been diagnosed with UC, I have been doing a lot of research on this difficult disease. I was surprised to discover that that there so many people around me affected and truly suffering from this currently incurable condition. Suffering not just from severe pain, but from complications to their daily life.
What is really surprising is that no one really knows what is causing IBD. Possibly genetics, possibly the use of antibiotics, maybe lifestyle factors e.g. foods, smoking, sterile environments etc. There is a theory that IBD is on a rise in developed countries and less prevalent in less developed but it is possible that this statistics is skewed by people being diagnosed or not. There is a lot of mystery in this disease but what is evident that it is on a rise - including in countries such as European Nordic countries, US, Canada etc… (https://www.sciencedirect.com/science/article/pii/S2468125319303334). Too many kids are being diagnosed with and suffering from IBD
Not only IBD is a chronic disease that is causing a lot of suffering in people, it is one of the causes of colorectal cancers later in life (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2725331/) which could lead to eventual death in many IBD patients.
Quite a few pharmaceutical companies today are producing or developing new novel treatments for IBD, including biologics. But the this condition requires a personalized treatment and there is not black and white decision on what would work for what kind of patient better. And there is no cure - YET. But, there is a promise with many new treatments in a pipeline and new research and methods advancing such as fecal microbial transplants and nutrition treatments.
However you look at it, I think this is a perfect OHDSI case that could benefit from a large scale global network study utilizing data from patients across the world and bring real value and answers to so many people - across the world - suffering from this currently incurable disease. I am sure it will also spark a lot of interest in various organizations who are trying to tackle this condition today - from big pharma to hospital centers to government institutions