Way back in 2010, I went to Indiana University/Purdue University Hospital (IUPUI) for some testing on my pancreas and common bile duct. There are several posts about it if you want to go back and read more, but the one thing you won't find is that they asked me if I wanted to be part of a clinical trial. I said absolutely - until I realized what it was exactly. Long story short, it involved suppositories and that was NOT about to happen, so I didn't do it. Regardless, I have always been interested in clinical trials and wondered why I have never been asked to be a part of one by any of the doctors I have seen - the doctors who cannot figure out exactly what it is that is wrong with me or seem to find a decent medication to help me. Certainly it isn't because of my aversion for suppositories.
But what do clinical trials do anyway? What's the point of them? Here's the 411. (Do people even say, "here's the 411" anymore?) I don't know. But here it is:
But what do clinical trials do anyway? What's the point of them? Here's the 411. (Do people even say, "here's the 411" anymore?) I don't know. But here it is:
Clinical research trials help the medical community prevent, diagnose, and treat diseases. During clinical trials, new treatments (and more!) are tested with voluntary participants. Participants may decide to join a clinical trial because they are looking for new treatments for their own conditions, or they may want to help push medical research forward. Clinical trials test interventions such as new medications, medical devices, procedures, or changes to behavior (like seeing how an adjusted diet impacts your IBD).
The clinical trial they wanted me to be a part of when I was in IUPUI was to see if taking Ibuprofen suppositories before, during, and after an ERCP prevented a pancreatitis attack (which can happen due to the manipulation of the pancreas during the procedure). Unfortunately, I actually did have an acute pancreatitis attack after my procedure - and it was terrible. I often wondered if those suppositories would have prevented the attack. I looked it up and this was a clinical study in several areas, not just IUPUI. I never took the time to fully read the final research results though.
Here's the thing with clinical trials - most of them take place in major hospitals where there are already sick people. A patient normally cannot just decide to become part of a clinical trial. Your doctor or hospital generally helps you get involved, and typically they are only in major medical institutions in highly prominent areas. TrialSpark wants to change that by streamlining the way clinical trials work and how the research is compiled, kept, and utilized. The great thing about participating is that you not only help contribute to medical knowledge, but you also receive close medical care, advice, and support from a research team who understands your condition. You may also be able to access new treatment options before they are publicly available. There is something to be said for being part of a solution.
So who is TrialSpark? They are a startup in NYC working to make clinical research faster, smarter, and more accessible - so millions more can get the treatments they need. Plus, they have several trials specifically for Crohn’s and ulcerative colitis patients whose past treatments or medications haven’t worked for them. Very cool!
I alone have tried so many different treatments for my symptoms - from medications, to diets, to alternative therapies - remember the acupuncture? Nothing has worked for me. The frustration knowing you fail treatment is immeasurable. I've seen it in others with IBD also. I've watched them go through it from behind my computer as I monitor their progress through their own personal blogs, Instagram, and Facebook accounts. So many people with IBD are suffering and I hate it for them. I hate IBD and what it does to them, their bodies, their bank accounts, and their lives. Being a part of a clinical trial could potentially stop that. Crohn's and colitis could eventually be a thing of the past due to trials like these. What would that be like? Can you imagine?
TrialSpark currently has trials going on in New York City and Washington D.C. and you can checkout their Trial Finder HERE. More trials in more areas will be added as additional patients show interest.
I know that I personally feel like the current healthcare system is failing me. I don't feel taken care of. I don't feel helped. I don't feel hopeful. As patients, TrialSpark is giving us a way to feel all of those things. Check it out, think about it, talk about it, and spread the word.
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