In addition to our health care moderators Drs Temkin, Westin and Becker-Schutte, we were joined by Dr. Christina Annunziata (@CMAnnunziata), Clara Health (@aaronjun_, @Clara_Health), Clearity Foundation (@ClearityFnd), Lilly Trials (@LillyTrials) and Smart Patients (@RobinSmrtPtient, @smart_patients). Twenty-seven participants created 1.4 million impressions during the hour chat. You may find more analytics here.
Below is a sampling of responses to our questions. A full transcript may be found here.
T1: Before looking for trials, what information do patients need? What is helpful to consider/decide ahead of time?
- T1 it's important to know your medical history before looking for a #clinicaltrial. Type of cancer, stage, prior treatment.
- Clinical trials can work for women at any point in their #ovariancancer experience and should be considered along with standard of care. Physicians may not always suggest a trial. It's important to speak up and ask questions. Find out more at: https://www.clearityfoundation.org/clinical-trials-can-help/
- Before starting to look for trials, it can be helpful to read about the differences between standard care and receiving treatment as part of a trial. We wrote a guide highlighting the differences here! https://guides.clarahealth.com/preparing-for-your-clinical-trial/
- Every trial protocol is different, so knowing what matters in your trial search before you get started can help you narrow down the options. For example, how far you're able to travel, if there is family who can help take you to visits, taking time off work etc.
- at any point in decision making, patients need to know a much as they can about their disease state/progression, resources (financial, logistical, medical team, etc.), & approved treatment/therapy options. Without that info, it’s hard to make an informed choice.
- Your doctor should want to discuss the possibility of #Clinicaltrials with you. And help decide what's right for you.
- Our Guided Trial Finder is the only #ovariancancer focused clinical trial search engine that currently exists, free of charge. To find a trial, click here: https://forms.clearityfoundation.org/find-clinical-trials/
- Search engines on clinical trial databases like https://www.clinicaltrials.gov/ or https://www.lillytrialguide.com/en-US are a great place to start learning about enrolling clinical trials across conditions or diseases.
- To find a #clinicaltrial - there are a number of key resources. Your MD can help, as can a local research navigator. Search engines like https://clinicaltrials.gov/ or local institution websites can help too!
- T2: Clearity’s search tool for clinicaltrials is user friendly. The Emerging Med site looks promising (the clinical search tool done with SHARE). And FORCE has a clinical trial search tool specific to hereditary cancers.
- Aside from finding a trial, the steps to connect with the right individual from the clinic, insurance, and travel can be its own (huge) challenge. https://clarahealth.com/ not only helps patients find a trial but also joins them through the entire process of enrolling
- To find @theNCI trials, they have their own finder and an 800 number with navigators https://www.cancer.gov/about-cancer/treatment/clinical-trials/search
- T2: There are several key trials specifically for women with gyn cancers. some can be found through @NCICCR_WMB https://ccr.cancer.gov/womens-malignancies-branch
- @SGO_org has a clinical trial glossary to help understand the terms used https://www.sgo.org/patients-caregivers-survivors/clinical-trials/clinical-trials-glossary/
- Each person has their own trial preferences, but if you ever feel like you’re being pressured to sign up for a trial without the time to make an informed decision, DO NOT CONSENT. It’s not informed consent if you don’t have time to be informed.
- Whether the trial is open AND currently accepting patients is definitely important to figure out. Then you can start looking into if you qualify - some things may keep you out (exclusion criteria) and some will match (inclusion criteria)
- @theNCI dictionary of cancer terms is helpful as your read through trial descriptions: https://www.cancer.gov/publications/dictionaries/cancer-terms
- T3: When designing a study, the research team specifies guidelines about what kind of patients the treatment is meant to target, which are the "eligibility criteria" that specify who can participate.
- @CISCRP has great resources on explaining what a clinical trial is & what eligibility criteria are.
- We find that @ClearityFnd has really great, SPECIFIC resources that are super helpful for folks looking into gyn cancer trials.
- Smart Patients has an integrated glossary and members who can explain terminology and inclusion/exclusion
- T4. Get exact contact name and send your materials directly using FedEx - must deliver to that exact person! Mail goes astray.
- T4: Tip: Prior to meeting with the research coordinator or doctor, write down possible questions to ask. You may find it helpful to bring a friend or relative with you as another set of ears to hear the responses to your questions.
- T4: Prior to enrolling in a trial, specifically phase I studies, questions about the # of patients already treated, drug effectiveness & side effects are important to ask. Check out our list of helpful q's to ask when contacting the study team: https://www.clearityfoundation.org/trials-questions-to-ask/
- You can ask them 1) what are your alternative options, 2) goals of the #clinicaltrial, 3) how long you will stay on the trial, 4) adverse events, 5) logistics/travel
- Have your records ready, read over the protocol (if you need help, https://clarahealth.com/ offers 24/7 live chat for all patients, just sayin). And remember you aren't bound to joining. Ask any question you have.
- During informed consent, a member of the trial team will go over the trial in depth to make sure you understand all the details. Bringing a family/friend if possible to help take notes can reduce the information overload from the long informed consent process!
- Every clinical trial must have a study protocol approved by an Institutional Review Board and FDA. Key features of the study protocol are available to the public on websites like https://www.clinicaltrials.gov/
- Bring a Caregiver/ friend . Two ears are better than one. Have some questions written out ahead of time, take notes. Don't be afraid to ask questions and for a tour of the treatment area.
- T5: Study protocol: complete outline of study often looks intimidating. Ask about what you don't understand. Write down trial NUMBER
- T5 Making sure you have had the opportunity to ask all of your questions. A copy of the consent with study team contact information should be provided. Take a day to think it over!
- T6: Look for a trial that guarantees you the treatment you want (no undesirable treatment arms in the study)
- T6: "Patients can check our website to see if the effectiveness and side effects of any of the trial drugs have already been reported. We show results for all standard chemotherapies and drugs in advanced clinical trials.” (1/2)
- T6: "We want to make it easy to find these results so that women don't have to spend hours trying to find the right information to help them make informed choices about treatment options.” – Clearity’s Scientific Director, Dr. Deb Zajchowski (2/2)
- T6: If possible, after speaking with the study teams, you may want to talk to your family, primary care physician, and an additional source for a second opinion before choosing which to enroll in. Everyone can bring a different (equally important) perspective!
- T6: you can choose the right trial for you based on if it is selected for your tumor type vs. an "all comers" design. Other considerations are toxicity, logistics, and any known efficacy
- T6: If you want to learn more about the investigational drug in the study, you can search for published information in peer-reviewed medical journals.
- T6: consider the phase of the trial (1,2,3), whether it is randomized (some get experimental drug, some get standard care), and whether it is specifically designed for your particular type of cancer (biomarker, histology, gene mutation, etc)
- Participating in a #clinicaltrial is voluntary
- You *always* have the right to say no & leave a trial.
In addition to those resources shared in the comments above, you may find additional resources below.
A special congratulations to #gyncsm health care moderator Dr Shannon Westin for being chosen for CURE Media Group 2019 Ovarian Cancer Heroes®.
We will not be holding a #gyncsm chat in March. Please save the date and join us on April 10, 2019 at 9pm ET as we discuss The Origination of High Grade Serous Ovarian Cancer with Dr Ronny Drapkin.
See you in April!
Dee
#gyncsm Co-founder
ADDITIONAL RESOURCES
LillyTrial's TrialGuide Blog
https://blog.lillytrialguide.com/
Lilly 10 Things You Need to Know about a Clinical Trial
https://www.lillytrialguide.com/en-US/about-clinical-trials?twitterfocus=3#/tenthings?utm_source=twitter&utm_medium=organic&utm_campaign=ltg&utm_content=ltg_117
Clara Health's Step by Step Guide to Finding and Participating in Clinical Trials https://guides.clarahealth.com/how-to-find-and-participate-in-clinical-trials/
Understanding Gynecologic Clinical Trials - Video Produced by the Society of Gynecologic Oncology (SGO) and the Foundation for Women’s Cancer (FWC)
https://youtu.be/UFGb8nQkE8c
@CancerTodayMag Tomorrows Trials https://t.co/xpCxw99tZt
@cure_magazine Clinical Trial Exclusions https://t.co/t3dLp1lZOz
