Digital Habits of Breast Cancer Patients Looking for Clinical Trials

Calendar Icon June 3, 2021
Reading Time Icon Read Time: 4 min
By Ciitizen

Have you been diagnosed with metastatic breast cancer (MBC)? If so, your oncologist may have explained that most MBC patients initially have positive responses to their first-line MBC treatment but may go on to develop resistance and need to be switched to a second, third, or even fourth line of therapy. In such cases, participating in a clinical trial may be your best treatment option.

Are There Barriers to Clinical Trial Participation for MBC Patients?

Sadly, the answer is “yes.” Just 8% of adult cancer patients in the US elect to participate in clinical trials. In some cases, this may be due to patient misconceptions, such as believing that they may receive a placebo and no other treatment. However, it’s important to recognize that for ethical reasons, cancer patients will always receive treatment in a clinical trial. At the very least, they will receive the current standard of care and a placebo or the standard of care and the agent under investigation.

There are other, more structural barriers to trial participation. Research has shown that more than 50% of cancer patients didn’t enter a clinical trial because no trial was available for their specific cancer type or stage. More than 20% have not been eligible due to strict criteria excluding certain comorbidities or other factors, such as being heavily pretreated or having metastatic disease, such as brain metastases. The American Cancer Society and other cancer research organizations are stressing the need for updating clinical trial inclusion and exclusion criteria to safely include patients with common comorbidities and those with metastatic disease.

Becoming a “Digital Detective”

Due to such efforts, a growing number of clinical trials are becoming available for patients with MBC. Unfortunately, many are never told about available trials. So, it’s critical to proactively ask your oncologist about clinical trials, as well as to put on your “digital detective” hat.

What are the optimal digital habits of breast cancer patients looking for clinical trials?

Consider the following:

  • If you’ve asked about available trials for your MBC type yet your healthcare team states that no such trials are currently available, it’s crucial to obtain your complete medical records before beginning your search for available trials. The organization and online platform, Ciitizen, can help you get your records easily for free.
  • Understand the importance of keeping current on information about MBC research, regularly reading the most up-to-date treatment options.
  • Because medical journal articles are written in academic language, they can be challenging to understand. Therefore, optimal digital habits of breast cancer patients seeking clinical trials include identifying online resources that regularly provide BC research updates in patient-friendly language. Many MBC and BC advocacy organizations provide such updates, so you’ll want to bookmark these sites and visit them regularly. These include the American Association for Cancer Research’s Cancer Today online magazine and a series of reports on the Metastatic Breast Cancer Alliance (MBCA)’s website.
  • Many digital resources are available for free online for cancer patients who wish to locate clinical trials, including the National Cancer Institute, ClinicalTrials.gov, CenterWatch. BC organizations’ online clinical trials search tools include the following:
    • The Metastatic Breast Cancer Trial Search is a clinical search engine designed specifically for MBC patients. Simply enter your medical information regarding your MBC diagnosis, and search to locate clinical trials. Optimal digital habits of breast cancer patients looking for clinical trials include returning to such search engines regularly to determine whether new trials are currently recruiting. The MBCA’s website also has a section called Metastatic Trial Talk, which includes monthly updates on new MBC trials.
    • The Research Search and Enroll Tool is offered by the nonprofit advocacy organization, FORCE (Facing Hereditary Cancer Empowered), which is dedicated to providing expert-reviewed information to people with or at risk for hereditary cancers, including BC.

Consider Innovative New Clinical Trial Designs

In addition to searching for clinical trials specifically designed for or that include MBC patients, you should seek out innovative research trial designs. Ongoing cancer biology research has revolutionized science’s understanding of cancer growth and has led to an increasing number of diagnostic biomarkers and molecular therapeutic targets for many cancers, including BC. This has resulted in novel research trial designs, enabling the identification and study of novel targeted agents. Complex Innovative Design trials are designed to answer several research questions versus just one, compared to traditional randomized clinical trials. For example:

  • Umbrella trials assess multiple targeted agents for one cancer type, randomizing patients into subgroups based on identified molecular alterations. I-SPY2 is an ongoing umbrella trial using an adaptive randomization design, giving greater weight to trial arms that have had positive outcomes for the participant’s tumor subtype. Up to five agents or combinations are tested in parallel, with subgroups based on locally advanced BC of different subtypes (e.g., HER2+ or triple-negative BC) receiving different targeted therapies before surgical treatment.
  • Basket trials include participants with various cancer types that have common molecular alterations. The NCI-MATCH trial is an ongoing basket trial that stratifies patients with MBC or other advanced resistant solid tumors and lymphomas, testing agents that target the specific molecular alterations for each subgroup.

The Common Thread: Obtaining and Maintaining Your Medical Records

Whether you’re interested in locating traditional RCTs or trials with complex, innovative designs, it’s critical that you have available all your medical records concerning your BC type, specific treatments received, and biomarker and genetic sequencing results. Although gathering your records may seem intimidating, the good news is that Ciitizen is here to help. Simply click here to get started. They’ll collect all your medical records and digitize them—100% free. You’ll soon be on your way to identifying the clinical trials that are right for you.

Ciitizen is a free service that helps patients get more out of their health records. Our platform enables patients to find better treatment options and gives them the opportunity to advance the research for cures.

Ready to get your medical records in order? Get started today!

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