Connecting Chronic Illness Patients with Life-Changing Clinical Trials

My name is Lacey, and I am the Community Manager for Shadow’s Edge – a free mental health mobile game for young people facing chronic illness or other medical challenges. One of the many wonderful things about my job is that I often get the chance to meet many wonderful people in the mental health and chronic illness sectors and get to learn more about how they are changing the world for the better and connecting chronic Illness patients with clinical Trials.

I recently had the honor of connecting with the team behind FindMeCure and I wanted to share this amazing company with our Shadow’s Edge community. Not only are they such amazing people to talk to, but they are also providing a much-needed resource for those with chronic illnesses seeking treatment and relief.

Hi, my name is Nelly, and I am the Marketing Specialist and Patient Coordinator for FindMeCure – a free platform for patients who are looking for clinical trials near them. What I love the most about what we do at FindMeCure is the feeling of hopefulness whenever we successfully connect a patient to a trial. It means that this person can now access a treatment in development that could benefit them more than anything already available. Many of the patients who apply for clinical trials have already tried a few treatments with very limited success and desperately need something to finally ‘work’. 

What is FindMeCure and how does it help chronic illness patients?

FindMeCure is a free online platform where patients can search for clinical trials near them. But this is not where our support ends – when a patient applies for a trial through the platform, we reach out to the study team on their behalf. We want to make the path for the patient as short and as straight-forward as possible: they search for trials, apply, and get connected to the relevant people.

Many patients nowadays find us through our blog as well. We make it a priority to spread awareness about chronic illness and provide other resources like patient blogs / YouTube channels to follow, organizations, information about support groups, etc. 

For someone who has never been a part of a clinical trial before, can you explain how this could be a potential treatment option for someone with chronic illness?

Absolutely. We do a lot of patient advocacy as well and we make it a point to spread awareness and fact-based information about clinical research. So, a clinical trial is typically (but it doesn’t have to be) an interventional study, meaning – the medical professionals intervene (by administering a treatment) and closely monitor the results. There are observational studies as well but most patients looking to participate in research do so because they’re hoping for better treatment.

By the time a certain treatment reaches Phase 1, which is when it starts being tested in humans, researchers already know it’s safe because it has been tested in animal models. What they don’t know is – does it work better than other treatments? what is the optimal dose to administer? can it treat this disease better than the Gold standard treatment?

The aim of every single company that finds a potential treatment is for that treatment to either perform better than others, i.e. prove to be an improvement on what is available, or treat special cases that the Gold standard doesn’t.

This means that if you do find a suitable trial for you, you receive an innovative treatment for free that can significantly improve your symptoms. In fact, there are now more and more cases when if you do show improvement on the treatment you can continue to receive it after the trial is over. It’s not guaranteed but it’s increasingly common because the care for the patient should not stop once they’re out of the study.

Who conducts these clinical trials? And how is the information found from the patient’s trials used?

Usually, the studies are sponsored by pharmaceutical companies that have developed a molecule that shows therapeutic potential. Sometimes they’re sponsored by academic institutions.

Different professionals are then involved in the study process – the design of the study, the patient recruitment, the administering of the treatment, the monitoring, etc. The information collected during a study is used to determine how well the treatment works. The information itself (collected blood samples, scans, etc.) is not made public. However, the results of the study are.   

How did FindMeCure come to be? What was initial spark that began the company?

Maya Zlatanova’s sister got very sick but there was no real treatment available. Maya was already familiar with clinical trials so she began searching for an alternative, something still in development. She quickly realized, however, that even someone with her background in the area could get easily confused by the clinical research jargon and lost in the scattered information out there.

This is how the idea of a patient-friendly platform where people can search intuitively was born. Maya partnered with Miro and Ivaylo and they stared building a team of like-minded people. The rest is history.   

Considering how the company started, does that mean many of you on the FindMeCure team have similar stories about caring about someone with chronic illness? Or having one yourself?

The team has previous experience in the area of clinical research and patient advocacy and our values are what brought us together. All of us are driven by the desire to bring innovative treatments closer to the patients who need them.

What would someone need to get started with FindMeCure? Does it cost anything to join?

No, searching for trials on FindMeCure is completely free. The whole process is free. Also, when you join a study the cost of treatment is covered by the study sponsor – the necessary procedures for monitoring are also covered. In some cases, some additional costs can be covered as well – it’s increasingly more common. We’re talking travel costs, accommodation (if you need to stay over), things like these.  We’re big advocates for more patient-centricity in clinical research because the reality is that even people who want to join and are eligible sometimes cannot afford to take time off work or travel to a different city.

Now with Covid-19, conducting remote or virtual trials is becoming a priority which could relieve the burden on patients.

Do you have a favorite success story from someone who has benefitted from FindMeCure?

Oh, there are so many stories! People reach out to us with the most touching stories. There was this young man who at the beginning of the pandemic was looking to volunteer for Covid research. His girlfriend was suffering from an autoimmune disease and they couldn’t see each other because it wasn’t safe – he wanted to help research progress so they could finally be reunited. We connected him to a trial accepting healthy volunteers. This one is my favorite.

I also remember one story close to the heart of my colleague Ann-Marie. It was a young couple, where the husband had a rare cancer type and there was no study available in their country. We successfully connected them to a study in Romania, and they told us later that the results were very promising! These stories truly make your day and the journey worth it.

You can find out more about FindMeCure and check out their amazing resource at FindMeCure.com. You can also read the blog they have written about us and our game by clicking this link!