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6 Ways Patients Can Find Clinical Trials Worldwide

For most people, death is a very uncomfortable topic and not likely to come up in normal conversations. Still, we’re all going to be faced with it so maybe it’s best we become more comfortable discussing things like “the c word”. Those of us fortunate enough to have some advance notice of our demise, such as in the case with cancer patients, will no doubt be aggressive when it comes to finding the best treatments. More so, the loved ones of those who are diagnosed with diseases are much more likely in today’s information age to take things into their own hands, much to the chagrin of doctors everywhere who love nothing more than some armchair medical expert telling them how they ought to proceed with treatment. What patients and doctors can all readily agree upon is that much of the latest and greatest treatments can be found in the +55,000 different active medical trials taking place around the world. Let’s use a real-world example.

Let’s say that all those years of smoking ganja along with that chain smoking habit you kicked a few decades caught up with you. After a few months of regular and unusual coughing fits, you go to the doctor and you’re told you have Stage IV cancer, non small-cell lung cancer (NSCLC) to be specific. It’s one of the most deadly forms of cancer, and the doctor’s recommended treatment is a combination therapy of Carboplatin and Vinorelbine. This is a well-researched chemotherapy treatment but a cursory look through the various clinical studies shows that the average life expectancy is around 9-12 months with this treatment. That’s actually quite good when we look at survival rates for NSCLC  from two different cancer patient information databases (SEER and CTCA):

What do you do next?

In today’s litigious society, new treatments for cancer can’t just be unleashed upon patients without extensive clinical trials. Pharmaceutical companies need to prove without a shadow of a doubt that the new therapies they’re bringing to market will do more good than harm. They have to prove that in a statistical manner that will stand up in court. This means that they need to do lots of studies or “clinical trials” as they’re called. An excellent idea for those who are newly diagnosed with cancer is to start researching clinical trials. Here’s how people typically find out about clinical trials today:

Source: CenterWatch

The reason that only 10% of referrals come from a physician or nurse is because your doctor doesn’t have time to stay on top of what’s happening with the +55,000 active clinical trials for every one of their patients.  You need to take things into your own hands and start doing some research. The first company that you can check out is a startup called Science37 we wrote about before which builds communities around diseases so you can more easily find clinical trials. Start there, and then move on to these next 5 companies. Note that the location of the company has no bearing on the location of the studies you are searching for.

The first and most obvious place to look for clinical trials around the world is to invoke the U.S. National Library of Medicine which contains a huge database of trials that is also known as ClinicalTrials.gov. You can search in any country around the world and a simple search using “lung cancer” as a criteria returned more than 5,000 results from around the world as seen on the below map:

That’s all fine and dandy but the problem that you’re going to run into immediately is how to find out which studies are most appropriate to your particular situation. This is where we might want to start looking for companies that have made the process of finding appropriate clinical trials easier by developing “matching” functionality. One such company is called Antidote.

Founded in 2010, London startup Antidote has taken in $28.9 million in funding to “transform the way patients and researchers connect“. With backing from pharmaceutical giant Merck, the startup sets out to solve the problem that 80% of medical research is delayed because of lack of patient participation. At the present moment, there are 55,350 open research studies which are looking for 42 million participants. Antidote allows you to search these trials with a search engine that is intuitive and easy to use. We were able to find 350 open studies for NSCLC in about 30 seconds. Be prepared to answer moderately sophisticated questions about your condition such as “Do you have any EGFR mutations?”. You can say “I don’t know” but it’s better if you can answer correctly to better match trials with your condition. After about a minute of answering questions we were presented with a list of 294 trials to check out:

It’s at this point you’ll need to dig in and start figuring out which trials best suite your current situation and are most accessible by location. Drilling into each study will show you further information on eligibility along with a list of site locations where you can participate. Once you choose a location, Antidote will then email you contact information for particular individuals at the location(s) so you can call or email them.

Founded in 1994, CenterWatch claims to be “the global leader in providing clinical trials information” for both clinical research professionals and patients. In 2016 they were acquired by WIRB Copernicus Group, the world’s largest provider of regulatory and ethical review services for human research. They were the first Internet site to publish detailed information about active clinical trials, and their search engine allowed us to quickly pull up a list of 428 clinical throughout the world for NSCLC:

Be prepared to tuck in on your own after that, as you’ll need to check and see what the recruitment status is for each study and then see what the eligibility requirements are.

You may have heard the terms “early access program”, “expanded access”, or “compassionate use” which all refer to the use of a investigational medical product outside of a clinical trial. Essentially, this is what patient and physician can turn to when they have exhausted all other options. Founded in 2012, Amsterdam startup myTomorrows has taken in around $22 million in funding to develop their online platform which lets you search a database of 350,000 clinical trials and 300 early access programs around the world. We tried to use the search engine to find results for NSCLC and didn’t have much luck finding anything. It could be because we weren’t doing something right, but it all comes down to usability. If we can’t get some traction with search results after a few minutes of tooling around then we can only imagine how tough it is for someone who doesn’t have a team of self-important MBAs at their beck and call. The company will no doubt be reaching out to us shortly so we’ll try and figure out what went wrong when they do.

Founded in 2000, EmergingMed has taken in an undisclosed amount of funding to develop their “clinical trial matching” platform which has a handy function that lets you see locations on a map. We searched for “lung cancer” with no other criteria and the platform returned 1,055 different studies. If you don’t specify your zip code, you can see all the studies and then filter them using the below fields:

As you can see in the above example, your ability to find the study that best suits your particular situation will require a bit more knowledge of medical terminology than your average person would have in order to quickly arrive at a shortlist of the best possible clinical trials that you can then review with. Choosing the “match to trials” option and then creating your own profile on the platform with help from the system to determine which trials might be most suitable for you.

As we mentioned before, your physician will probably not be too thrilled with your desire to take things into your own hands. Going down this path means you’ll need to separate your emotions from the entire process and present things in a rational and analytical manner to ensure that you are being helpful. You might want to raise the topic of clinical trials to your physician first, as they may have more sophisticated methods of searching than the six methods we’ve given you today.

We were incredibly surprised to come across a recent HuffPo article which actually provided some insightful content, and it talked about how research performed by pharma company Lily showed that “just 16% of cancer patients were aware of any relevant trials” in stark contrast to the “95% of patients expressing a desire to consider such an option“. In the future, we would expect to see more primary physicians start to promote platforms like Antidote which help connect patients to active trials. In the meantime, now you have 6 tools you can use to get on with it yourself.

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