Advice from Dr. Tom

Dr. Tom Marsilje, a cancer researcher and colorectal cancer patient advocate, founded the clinical trials neighborhoods in COLONTOWN, PALTOWN’s first patient and caregiver community. We seek to honor his legacy by continuing his focus on access to clinical trials information and empowering patients to find the best treatment options available. Dr. Marsilje passed away in the fall of 2017.

Here are his personal tips on getting started with researching clinical trials. He believed strongly in “getting your planes on the runway” — identifying your trial options BEFORE you need to make a decision, and in giving patients the tools to do their own research. As he said, “no MD or PhD required!”

1. Do not limit yourself to a particular hospital

Trials are separate from standard of care. You are trying to pick the best trial option, not a primary hospital — often they will not be the same place. A MD at a particular cancer center will often (at best) only know trials at their own hospital, which unfairly limits choices — which is why trial finder tools are so important.

2. Identify which state(s) you can financially and logistically go to

Few people can just drop everything and fly anywhere in the country. Although there are exceptions — such as the NIH TIL trial — most other trials are so experimental that geographic location and reducing travel and financial upheaval to you and your family should be a major choice factor. You can limit your search of the trial tools to only show trials in state(s) that you can easily get to. Watch our clinicaltrials.gov tips video for help with this!

This will lower the trial numbers you get in your search results dramatically. Once you have that list (usually less than 10 options for most people) it becomes a much less intimidating task to look through.

3. Look at the inclusion/exclusion criteria of each trial

You can narrow your list even further by throwing out trials that have requirements you obviously don’t meet (like number of prior therapies, etc — stuff you don’t need an MD of PhD to answer).

4. By that point the list is usually relatively small

If you are a member of one of COLONTOWN’s Clinics neighborhoods, you can look through the discussion threads. At that point, you can also ask your COLONTOWN neighbors and our scientific leadership team about a specific trial.

Not a member of COLONTOWN? Join now!