Clinical Trials: How the IBD Community Can Drive Breakthrough Research

Clinical trials are the backbone of medical breakthroughs and the lifeblood for the future of treating diseases like Crohn’s and ulcerative colitis. When I started on my biologic treatment in July 2008 to get my Crohn’s disease under control, there were only two treatment options on the market. Fast forward to 2020, and now there are 12 biologic treatment options for IBD. This is all thanks in part to clinical trials. This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about the importance of clinical trials. I am passionate about educating others on this topic with the hopes of raising awareness about the power of breakthrough research.

It’s promising and hopeful to know that as we speak, according to ClinicalTrial.gov, there are thousands of clinical trials geared towards IBD research underway around the world! Despite the pandemic, recruitment and patient enrollment for clinical trials are still underway. While there may be 12 biologic treatment options on the market, there are still so many patients who build up antibodies to every drug they try and have nowhere to turn. The Crohn’s and Colitis Foundation finds one-third of patients do not respond to initial IBD treatments. It’s imperative more options become available for our community not only now, but in the future.

Talk it out with your care team

By communicating with your gastroenterologist, you can learn more about the options available and how to find a clinical trial that is tailored to you and fits your needs. By participating, you can help shape the treatment landscape for the future and have a hand in pioneering innovative therapies. Some patients may shy away from clinical trials, thinking they’d be a guinea pig, while others are desperate to improve their quality of life and weigh the benefits as being greater than the risks. It all comes down to the patient population being better informed of what it’s like to be a clinical trial participant and how safety is paramount.

Understanding the safety measures to protect clinical trial participants

Prior to a clinical trial starting, it’s important to understand there are a lot of hoops to jump through. When it gets to the point where patients like you and me participate, the research process on the new treatment has already been going on for more than a decade. According to Clara Health, first the treatment is tested in lab cells and animal studies. Then, the Food and Drug Administration (FDA) gets involved and must give its stamp of approval for a clinical trial to get underway.

Clinical trial participants can have peace of mind knowing they’ll receive top notch medical attention from start to finish and be observed for any potential safety concerns. Every single potential side effect is documented and shared by the study team so that all participants are aware of any new risks, benefits, or side effects that are discovered during the trial.

When you think of participating in a clinical trial it’s empowering to know you are not only possibly helping yourself, but the entire IBD community. The future of how our disease is managed and treated depends on patients like us to step up to the plate. New treatments and therapies are dependent on us. Treatments can’t be created without us. So often the “what if” looms over our heads as IBD patients, in a negative way. With clinical trials, the “what if” signifies endless possibilities, hope, change, and breakthroughs that could ultimately shift and inspire what the future of care looks like for not only us but future generations who will be up against the beast that is Crohn’s and ulcerative colitis.

The Crohn’s and Colitis Foundation has many resources dedicated to this topic that are sure to put your mind at ease.

To learn more about clinical trials head to Clara Health’s website.

Paid IBD Research Opportunities: Check it Out

Calling all inflammatory bowel disease (IBD) patients and caregivers in the New York and Philadelphia areas! There’s a great opportunity to participate in research and receive $175 for taking part in a 60-minute in-person interview.

The main mission of the program is to improve the injection experience for gastrointestinal patients. syringe-1696020_1280Currently, many patients and caregivers struggle to inject medications correctly, which means patients don’t always receive their full dose of medication. This can lead to symptoms worsening and a greater threat of a flare up.

The study will assess an updated method of injection, so patients and caregivers have more of a sure-fire way to ensure medication is being received correctly and completely at the proper dosage. The interview responses will help inform the device development process. All responses and information will be confidential and anonymous.

Requirements to participate:

  • Must be diagnosed with Crohn’s disease or ulcerative colitis
  • Use a vial/syringe or TPN for medication
  • Ages 12-17 will be accounted as pediatric patients (will need to attend with a parent), anyone over 18 will be considered an adult.
  • Caregivers must be over age 18.

Click the following links to sign up:

New York

November 26-29

5th Avenue, 10th floor

Focus Room 693

New York, NY     1002

Deadline to register: Sunday, November 25

Philadelphia

December 2-7

M3 USA

1650 Market Street

Suite 3030

Philadelphia, PA     19103

Deadline to register: Saturday, December 1

Your feedback and expertise can help make it easier and safer for patients to inject and receive maintenance medication. As a Crohn’s patient of more than 13 more years, who has done self-injections for more than a decade, I can attest how critical this information is to the patient journey and to the future of medicine. By sharing your experience, you can improve the future of care for not only yourself, but many others in the IBD community.

Not able to make an in-person interview? boy-1986107_1920There’s also an online study—available to anyone in the United States—going on right now for those living with an immune system or digestive system condition. You can earn $15 for a 15-minute, online survey. Click here to get participate. The deadline is Tuesday, November 20.

Once you register for the studies, researchers will send an email invitation within 1-2 working days.