Questions to ask

We asked the more than 1,500 patients in COLONTOWN‘s Clinical Trials Neighborhoods what questions they would ask about a clinical trial they are researching. Not all of these will be relevant for each situation; we’ve also provided this in PDF form at the bottom of this section, so you can print it out, circle the ones you’d like to get answered, and take notes!

On the treatment or intervention itself, and why it might be an option for you:

  1. What does the treatment consist of?
  2. Why is this a good trial to try, for me? Is there something in my specific tumor genomics that aligns with this treatment?
  3. Are there other tests/updates we can get on my current state? CtDNA/Liquid Biopsy? HER2/3 status?
  4. What are the chances I will get the experimental treatment?
  5. What are the possible risks, side effects, and benefits of the study?
  6. How will I know if the treatment is working?
  7. How will you protect my health while I am in the study?
  8. What happens if my health problem gets worse during the study?
  9. Why is this trial better than other options?
  10. Are there trials at other institutions I should consider?

On trial logistics:

  1. How often will I have scans? What about other monitoring requirements?
  2. How will the study affect my everyday life?
  3. How long will the clinical trial last?
  4. Where will the study take place? Will I have to stay in the hospital?
  5. Will you provide a way for me to get to the study site if I need it?
  6. Will being in the study cost me anything? If so, will I be reimbursed? Will my insurance cover my costs?
  7. Will the study provide free scans and monitoring?
  8. Can I take my regular medications while in the trial?
  9. Who will be in charge of my care while I am in the study? Will I be able to see my own doctor?
  10. How often will I receive updates on the trial?

After the trial — or your participation in it — has ended:

  1. What happens if I acheive positive outcomes after the study is completed? Will I still receive the therapy being tracked during the study?
  2. Will you follow up on my health after the end of the study?
  3. Will you tell me the results of the study?
  4. If I withdraw, will this affect my other trial options?

Other considerations:

  1. Many patients and their oncologists say they need or want to exhaust “standard of care” first. Is that a good strategy?
  2. Will participating in one trial will exclude me from joining a different one later on?
  3. Who do I call if I have more questions?
  4. How will you keep my doctor informed about my participation in the trial?
  5. What steps will be taken to ensure my privacy?
  6. Is there any preliminary data available? What do prior studies of this treatment show?
  7. If it is a phase I trial, have any of the drugs or methods been tested separately in previous trials? Is there any data on safety? (Sometimes, trials are Phase I because the combination is new, but each drug is known).
  8. If it is a phase I/Ib or Phase I/II trial, has dose escalation been completed?
  9. How long has the trial been going on, and what response have participants had to date? 
  10. If only a small number of patients are responding, what is special about those patients? Why do you think I could be a responder? 

For immunotherapy trials:

  1. For those with an unresectable (uncurable) stage IV CRC: When should I look to enroll in an immuno-based trial?
  2. For MSS patients with low TMB, no PDL-1 expression, low TILs, and no Lynch mutations: Why do you think this trial would work for me?

Download a printable PDF of this page here.