_I just sat in on a webinar that was live cast from the Advances in IBD Conference which is currently taking place in Orlando, Florida. The specific topic of this webinar is something called IBD Plexus. Prepare to have your mind blown. _
The only exposure I’ve had to IBD Plexus was through this webinar, so I may not have all the facts down but the gist is that this is a new platform for doctors/surgeons/reseachers to compile data and to share research. When I say it like that it doesn’t sound all that impressive. However, this is on its way to being a game changer for IBD patients.
Doctors and patients agree that the current therapies for IBD are inadequate and inconsistently delivered. The idea behind IBD Plexus is that doctors and researches will essentially have a “one stop shop” for what is happening in the world of IBD—how other doctors are treating their patients, what is working, what isn’t working, and get this…based on patient data, how to effectively treat patients from diagnosis. Welcome to the future of IBD treatment!
Direct from the webinar, they explain the vision and goals of IBD Plexus like this:
Build a research and information exchange platform to accerlate research and transform the care of IBD patients.
- Unite clinicians, patients, and academia and industry
- Optimise use of data and samples across the research community
- Identify new drug targets
- Identify new biomarkers and diagnostics
- Improve the quality of care for patients with IBD
Can you imagine if your doctor could have told you, based on your data and pathology from the beginning, what course your disease would take? If your complications could have been predicted, how would you have done things differently? I would have eaten so much more Taco Bell had I known I’d lose my colon eventually.
Ok so how are they doing this?
IBD Plexus has and will have various components that make it the incredible tool that it is. These include:
- Pediatric and adult registries
- Data and analytic platforms
- High performance computing
- Centralized analytical lab
- Researcher portal
It is also broken into five different study programs or cohorts:
Quality of Care Program
- Over 30,000 patients within the next three years will share their patient-reports and clinical data
- Program goals include: Improve the quality of care delivered to IBD patients by defining standards of care for IBD and developing implementation program to measure and deliver care and continuously improve care.
- 1,100 children with Crohn’s are involved with RISK in 28 sites in US and Canada.
- Without bogging you down with medical jargon, RISK is being developed to identify patients at diagnosis who will likely have complications, frequent hospitalizations, and surgery. It will eventually calculate the effect of current medications on those complications. The end goal of RISK is to develop a diagnostic tool to identify these high-risk patients at diagnosis. WHAT! Boom. Mind blown.
- Over 7,000 patients participate in SPARC IBD and share their reported data, clinical data and bio samples
- Study goals include: Identify predictors of response to IBD therapies and to identify predictors of disease relapse among responders to therapies.
- Direct from the CCFA website: “CCFA Partners is an ambitious program from CCFA designed to improve the quality of life for patients living with inflammatory bowel disease (IBD) through research and education. We plan to enroll at least 15,000 or more patients in an online registry to obtain a better understanding of issues facing IBD patients, how they are functioning, what they eat, and how they receive treatment in different areas of the country. We use this network to provide topics for patients to discuss with their physicians and to help improve their quality of life.”
Real World Evidence Registry
- This will use CCFA’s network of 60+ clinical sites—the Clinical Research Alliance (aka, power team)—to create another clinical cohort, foocused on safety endpoints to make postmarketing studies more efficient
What is next for IBD Plexus?
Ok so who wants an IBD Plexus for Christmas? I know I do. IBD Plexus isn’t available to patients just yet, but that was the first question I asked when the Q & A opened up. The good news is they do plan to have a patient portal down the road, which is really exciting. In the interim, they’re working hard to get all those cohorts I listed above put into IBD Plexus. Within the next year they hope to have all the RISK data and samples in IBD Plexus as well as have huge enrollment in the SPARC IBD program. The team behind IBD Plexus also plans to release a dashboard for doctors to use with their Quality of Care program AND release more prep-to-research tools.
How can I get involved?
Right now unless you’re seeing a doctor at one of the partner sites for the programs listed above, there isn’t a lot you can do personally. However! You can go to the CCFA Partners page for get more information and sign up to be a part of the program which will directly feed into IBD Plexus.
What I really learned
I know that a lot of this just sounds like fancy medical terms, but trust me, this is all really great for the IBD community. What I learned is that there is a team of very smart doctors and scientists who believe that living the way we currently do with IBD is not acceptable. These are people out there who care about us even though they don’t know us. Jim Lewis is the Chief Scientist behind IBD Plexus and if I was in the same room as him, I’d probably thank him profusely, ugly cry tears of joy and give him a big hug. Someday treatment for IBD won’t mean endless surgeries and removal of organs and there are a lot of really smart people out there working on that.
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Jackie Zimmerman is a multiple sclerosis and ulcerative colitis patient and the founder of Girls With Guts. Since diagnosis, she has blogged her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community. In her free time (what free time?!) she spends time with her two rescue pups and plays roller derby. She’s online @JackieZimm.