There is always so much to discuss about Clinical Trials and this month we concentrated on who should consider a trial, how to finding trials, eligibility, consent as well as what important questions you should ask. You may find our transcript here and analytics here.
Below are sample responses and resources shared during our chat.
T1: What are some basic facts and key points about clinical trials that people should be aware of?- Infographic covering about the phases and types of trials. There are lots of great resources out there even if you are just starting out. https://www.nih.gov/sites/default/files/about-nih/public-trust/clinical-trials-infographic.pdf
- Women of color are underrepresented in clinical trials . https://www.medstarhealth.org/blog/gynoc-equity
- A lot of trials in the cancer space are testing new treatment vs. current treatment. So participating does not put you at risk for no treatment or less treatment. In fact, you often are super well monitored whether standard or cutting edge
- #clinicaltrials have 3 phases Phase 1 – small group of patients test for safety and side effect; Phase 2 how well does treatment work Phase 3 large group of patients confirm how well treatment works, side effects, compare to other treatments
- Trials are voluntary and also you *always* have the right to say no and leave a trial
- Resources on Clinical Trials #gyncsm @GYNcancer Clinical trial basics https://www.foundationforwomenscancer.org/clinical-trials/clinical-trials-basics/ @GYNcancer Understanding Gyn Clinical trials https://www.youtube.com/watch?v=UFGb8nQkE8c&feature=youtu.be @SGO_org Gyn trials what it means for you video https://www.youtube.com/watch?v=ZdOyBbAvc_c
T2: When should a clinical trial be considered? Does a patient need to bring up their interest in participating in a trial?
- Trials are NOT just a last resort. Trials can be for any part of your cancer experience - even risk reduction pre diagnosis, for nutrition, long-term survival, etc. Any time is a good time to participate!
- While patients shouldn't always have to start the conversation, they probably should. There are resources to help patients broach the conversation with their doctors.
- There are many different types of clinical trials and can be targeted to different populations and needs. It is important to ask your doctor what clinical trials are ongoing so that you can decide if any are right for you.
- It's great to learn about what clinical trial options are available at any phase of life/treatment. I used to think trials were just when there's no standard of care. I didn't realize we can research them on our own as well as through providers/hospitals
- It also depends where you are at. Sometimes it feels strange being heavily recruited into a trial with a new cancer diagnosis. Other times it feels hard to find a trial one qualifies for even when willing. Varies depending where patient is at.
T3: Before starting their clinical trial search, what information do patients need? What is helpful to consider/decide ahead of time?
- Patients need access to their records... which isn't always the easiest. Patients should decide if they are willing/able to travel for a trial. Patients should think about their own goals/motives in participating to guide decisions and be clear with healthcare team
- Patients should know their type / subtype, stage, if they have been tested any genetic mutations. Consider how far you are willing to travel
- t's good to know where the trial is located, how time & appt. intensive it is, how risky of course, & if expenses/costs will be covered. Also, it's VERY important to know if it's blinded or unblinded, & the phase & what those things mean
- Clinical Trial Jargon Busting Guide from @power4patients: https://powerfulpatients.org/2019/12/02/understanding-clinical-trials-a-jargon-buster-guide/
- It's a good idea to know why you'e considering a clinical trial before trying to pick one. @nih has a great website resource. https://beta.clinicaltrials.gov/
- This @theNCI site offers questions you should ask re-safety etc https://www.cancer.gov/about-cancer/treatment/clinical-trials/patient-safety?cid=eb_govdel
- A great resource is https://clinicaltrials.gov/ which provides a starting point of available trials. You can take this information to your doctor & have a more in depth discussion of what eligibility criteria and requirements are needed for a particular trial.
T4: How can patients search for trials? What keywords are helpful? Are there specific search sites for gyn cancers?
- For ovarian cancer, @ClearityFnd has some great #ClinicalTrial resources https://forms.clearityfoundation.org/find-clinical-trials/ as well as a Treatment Decision Support program
- this @theNCI site talks about how to search for trials . There is a chat feature on the site too! https://www.cancer.gov/about-cancer/treatment/clinical-trials/search?cid=eb_govdel
- Go to https://beta.clinicaltrials.gov/ There's just so much info, and you can input the type of trial you want.
- @OCRAhope has a search engine for finding trials https://app.emergingmed.com/ocra/home/
T5: Who is a “good candidate” for a trial? What is a study protocol? Where can patients get help on the terminology used like informed consent, eligibility, exclusion criteria, etc.?
- @CancerDotNet is a great starting point for many cancer-related topics. Here's their resources page for learning about Clinical Trials and how you might get involved https://www.cancer.net/research-and-advocacy/clinical-trials
- This depends on the specific trial. All trials have different requirements and not meeting the requirements for one does not mean not meeting the requirements for all
- to understand what you need to know about eligibility check out this from @americancancer https://www.cancer.org/treatment/treatments-and-side-effects/clinical-trials/what-you-need-to-know/what-does-a-clinical-trial-involve.html
- Trials do have "rules" about who can participate. which are in place to make sure the research can answer the questions it is trying to. In recent years, more attn is being paid to making sure these rules are needed for each trial and are not serving as barriers.
- Health equity researchers and advocates are also looking carefully to see if the trial requirements are keeping certain populations out of trial participation and working to build more inclusive language
- It can be overwhelming searching for a trial. It helps to have navigators to narrow down possible matches if at all possible. Patients also need to know we can look into trials outside our hospitals. I didn't always know that
T6: What questions are important to ask when contacting the study team? What factors should be considered?
- Your doctor may act as a liaison, but you can reach out to the study team directly w/ questions or concerns or just to get more information. Some study teams are better at marketing and communication than others... so patience is another tool when it comes to trials.
- So many ? * # days you will be on site for testing or treatment( if a treatment trial) * types and # scans , blood tests * compensation for travel * how and who to report side effects if you have them? * how long is the trial?
T7: For those who have been involved in a #clinicaltrial: What phase trial was it? What benefits or drawbacks did you experience?
- In maintenance phase, I was in blinded study. It was over 2 years ago & I still don't know if I got a Parp (or not) or Immuno (or not) which would have bene helpful during recurrences. That's been a challenge for me (& medical team)
- t can feel important to be in a trial, to maybe advance science even if one can't benefit personally. And, there are real risks with doses, drugs, & also that even in trials errors happen (medical, scheduling wise, etc. & it can be consequential).
- I was in a ph 1 treatment trial on initial dx. I appreciated having a study nurse I could call with any ?'s I had. Drawback: Long treatment days - 12 hours
- Anyone in the U.S. can participate in the NIH @AllofUsResearch project: https://allofus.nih.gov/
If you have not participated in a clinical trial, what are some reasons you did not?
- I didn’t do a trial or think to ask. Knew I had cancer, found during hysterectomy, but thought to be early. Final path showed 3a. Chemo started one week after my surgery follow up. It was a blur
- There are definitely risks and benefits to be weighed when deciding about a clinical trial. Know your own goals. Make up your own mind. It is okay whatever you decide with the info you have.
We not only chatted about Clinical Trials, we also celebrated our 9th Anniversary as a chat and community on Twitter . Thank you to everyone who has supported us these past 9 years.
There will be no #gyncsm
chat in October 2022.
Save the date for our next chat on Wednesday, November 9, 8pmET when
we’ll discuss Recurrence - reducing your risk and making treatment
decisions.
See you in November!
Dee and Christina
