You can find the complete transcript here and analytics here.
To provide you with an idea of what our chat discussion was like, below you will find a sampling of the answers to our questions.
T1: What role do #clinicaltrials play in cancer treatment advances?
What are some of the key trial design changes in the past 5 yrs?
- T1: #Clinicaltrials are key to helping us better prevent & detect cancer, find new & better treatments, & manage side effects
- T1: New trial designs let us study multiple cancers/treatments at the same time & learn which therapy works best for each patient
- T1: It's important for patients to understand that #clinicaltrials are NOT the treatment of last resort.
- T1: New trial design: "basket trial" offer single treatment for all cancers with specific biomarker (like ROS1 fusions)
- T1: "Umbrella" trials have multiple therapies for one type of cancer (ie ovarian) - the arm may be chosen based on molecular testing
- Immunotherapy is definitely trending as a treatment for many types of cancer and it is only in its infancy. Exciting!
- Another non- randomized Trial is the precision medicine trial know as NCI-MATCH Trial
T2: What is TAPUR? Why did @ASCO develop this trial? Who can participate? What makes TAPUR different from other trials?
- T2: #TAPUR stands for the Targeted Agent and Profiling Utilization Registry Study and is our first clinical trial ever
- T2: The study matches pts w/ targeted therapies based on tumors’ specific genomic profiles
- http://www.cancer.net/navigating-cancer-care/how-cancer-treated/clinical-trials/what-tapur-study
- T2: Our CMO @rschilsky and Past Pres. @DrJulieVose explain why ASCO developed the TAPUR study in this video: https://t.co/j9qEuIY3tY
- T2: TAPUR is for pts >12yo w/ adv. cancer & at least 1 genomic alteration targetable by a study drug. More: https://www.tapur.org/patients
- T2: TAPUR is designed to include a broader patient population than most trials & to mirror real-world clinical practice
- T2: Check out the study website https://www.tapur.org/ & FAQs https://www.tapur.org/node/31 for more details!
- T2: TAPUR is an option for patients to access targeted drug that is approved for a different cancer than theirs
- T2: For example, patient with ROS1+ cancer that started in colon can get ROS1 targeted drug approved for lung cancer
T3: What are Patient Reported Outcomes (PRO)? What progress have you seen on ensuring that trials meet patients' needs/interests?
- T3: PROs are anything reported directly by the patient, like symptoms or emotions. They reflect how patients feel & function
- T3: PROS - patient reported outcomes help determine the impact novel treatments in a clinical trial have on #QOL (quality of life)
- T3: More trials are incorporating PROs so outcomes can be measured against pts’ needs/interests https://am.asco.org/daily-news/rise-patient-reported-outcomes-oncology
- T3: Research has shown that when patients self-report symptoms, they have better outcomes https://t.co/cjl8npOxVE
- Self-reporting symptoms can serve to make patients feel more involved and they may be more open to sharing symptoms. This is great!
- Critically important to include & capture. Preferred Dr outcomes vs patient outcomes sometimes don't align
T4a: Have you been involved in a #clinicaltrials?
- T4 my brother was in a clinical trial for stage 4 colon cancer. It looked at EGFR+ drugs +/- avastin
- T4a: My cancer progressed after two different lines of chemo/rads. Targeted therapy clinical trial had me NED at first scan!
- I've participated in some interview studies and am signing up for PROMPT re: genetic variants related to cancer.
- I was in a phase 1 on initial DX for OC. I also have - or rather my tumor tissue has been in a few other trials
- I have been involved as an investigator in #clinicaltrials for years! Have never participated in one - but I would…
- T4a gathering tests/labs to begin immune therapy trial next week PPC 3c
T4b: If yes, what benefits or drawbacks did you experience? If no, what were some of the reasons? Were trials offered to you?
- Drawbacks of trials: hard to find "best" trial for you, may require travel & time away from family, varying level of risk
- T1b: Benefits of trials: receive AT LEAST standard of care, see top cancer docs, might help future patients as well
- my brother did well on trial, extended his life. trial helped clarify treatment. Brother also saw altruistic benefits
- T4b not offered. Have asked onc about using AI to prevent recurrence. Answer: not studied. Me: R U studying? Ans: no.
- A lot of doctors mention only the #clinicaltrials at their hospital.
- Patient communities continue to be one of the best places to find out about trials. There are groups trying to make it easier
- Because of #sarcoma & gynonc silos, women with sarcoma may not hear about trials run by different docs.
T5: Per @SGO_org, there is a crisis in gyn cancer trials. How can #gyncsm support research and encourage participation in #clinicaltrials?
- T5: #gyncsm can continue great advocacy work and spread the word about the benefit of #clinicaltrials
- T5: Educate yourself & share info with others! Online patient communities & chats like this one are a great start
- T5: Find ways to help more #gyncsm patients get molecular testing and join "basket trials" for any solid tumor type.
- Resource | Gyn Trials Crisis Fact Sheet from @SGO_org https://www.sgo.org/wp-content/uploads/2012/09/SGO-Clinical-Trial-Crisis-FINAL.pdf
- T5 @CancerDotNet has great resources on clinical trials: http://www.cancer.net/research-and-advocacy/clinical-trials
- T5: Call your congress person.
- T5: Contact your lawmakers & urge them to support research by increasing funding for @NIH and @theNCI
- T5: Consider having your #gyncsm tumor undergo broad genomic testing to help researchers identify targetable genomic drivers.
- @ClearityFnd can help with tumor profiling for #ovariancancer
- @SGO_org working on a #gyncsm specific #clinicaltrial search engine that we hope will simplify the process
We appreciate the insights and knowledge of those who participated in tonight's chat. And we hope as a community we will continue to educate women and their caregivers about clinical trials.
Additional resources from the chat are shared below.
We hope you will join us on November 8, 2017 at 9:00pm EST for our chat on Endometrial and Uterine Cancers. See you then.
Dee
#gyncsm Co-founder
RESOURCES:
Video | Understanding Gynecologic Cancer Clinical Trials from @GYNcancer
https://www.youtube.com/watch?v=UFGb8nQkE8c&feature=youtu.be
Understanding Clinical Trials - Your Guide from @GYNcancer
http://www.foundationforwomenscancer.org/wp-content/uploads/FWC-Clinical-Trials-Your-Guide-Brochure-web_updated.pdf
Diversity in Trials
http://www.cancertodaymag.org/Summer2017/Pages/A-New-Look-for-Clinical-Trials-Diversity.aspx
ASCO guide: new trial designs & precision medicine
http://www.asco.org/research-progress/clinical-trials/clinical-trial-resources/clinical-trial-design-and-methodology
ASCO Broadening Trial Eligibility Criteria to Make Clinical Trials More Representative
http://www.asco.org/research-progress/clinical-trials/clinical-trial-eligibility-criteria
Designing trials for adolescents
http://www.cancertodaymag.org/Summer2017/Pages/More-Options-for-Adolescents-in-Clinical-Trials.aspx
NCI-MATCH info
https://www.cancer.gov/about-cancer/treatment/clinical-trials/nci-supported/nci-match
TAPUR
https://www.tapur.org/
About TAPUR on @cancerdotnet
http://www.cancer.net/navigating-cancer-care/how-cancer-treated/clinical-trials/what-tapur-study
The National Quality Forum report on PROs
https://www.qualityforum.org/Projects/n-r/Patient-Reported_Outcomes/Patient-Reported_Outcomes.aspx
Patient Safety in Clinical Trials | Video by @theNCI
https://www.youtube.com/watch?v=y7TDwbrD7GQ&feature=youtu.be
Patients’ willingness to participate in clinical trials
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4706669/
Physician and Patient Participation in Cancer Clinical Trials
https://www.ncbi.nlm.nih.gov/books/NBK220370/
