Sorry it's been awhile! Right now, let's focus on important info about COVID-19. First, a major topic very few bring up: How do you want to be cared for if you end up in a hospital with COVID-19? Not a comfortable topic, but so very important! When doctors are surveyed, most say they don't want … Continue reading What to Think About BEFORE You Get COVID-19
Patient Advocates from across the US and around the world came together to share insights about DCIS at the 2017 San Antonio Breast Cancer Symposium.
The COMET Study Patient Leadership Team presented “Changing the DCIS Conversation: Development of an Alternative Discourse by Patient Advocate Stakeholders in the COMET Study.”
Advocates from the US, UK and the Netherlands highlighted their role as “partners” on PRECISION — “PREvent ductal Carcinoma In Situ Invasive Overtreatment Now.”
This international initiative was awarded Cancer Research UK’s Grand Challenge. Led by Dr. Jelle Wesseling of the Netherlands Cancer Institute, PRECISION aims to distinguish between lethal cancers that need treating, and non-lethal cancers that don’t.
Help keep patient perspectives at the forefront of DCIS research! Join the conversation by commenting below or on social media!
While others either mention or lament patient -engagement, -centricity, -centeredness, or whatever is trending this week, Patient Advocates In Research (PAIR) has been taking action for decades! The latest DIA Global Forum article (co-written with Patty Spears) offers insights about some of our work in clinical research, entitled, Beyond Patient Engagement: How Research Patient Advocates Contribute to … Continue reading Come on! Let’s move Patient Engagement into Action
So sorry for the silence! I've been working on many topics and issues, and you will hear about them soon. I also forgot to share this guest blog post I did back in March 2017. The Clinical Trials Arena post, Trial Results Create a Win for Patients and Companies, covers the reasons trial summaries need to make … Continue reading Trial results create a WIN for all!
Another good post about some of the new DCIS research that should give us better answers! If you want more information about DCIS, please join us at the SHARE DCIS webinar on 3/22/17 at noon Eastern: bit.ly/2hRYj8H
Where are the studies of women (like me) who have taken a less aggressive path for “low-risk” DCIS?
Until now — they didn’t exist.
Thanks to $13.4 million in funding from the Patient-Centered Outcomes Research Institute (PCORI), a long over-due clinical trial for DCIS has officially launched.
It’s called The COMET Study.
The goal is to learn if women with low-risk DCIS can avoid aggressive treatments and their physical and/or emotional side effects.
COMET stands for Comparison of Operative to Monitoring and Endocrine Therapy. It is a randomized prospective study that will enroll 1200 women at 100 cancer centers throughout the US.
My Role as a Patient Advocate
In 2016, I was invited to be one of four patient advocates on The COMET Study team.
We have enjoyed the opportunity to keep patient perspectives at the forefront of the study as well as this new website: www.dcisoptions.org
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4 new projects that will help lower confusion about Ductal Carcinoma In Situ (DCIS)
Due to popular demand, former blog guests Bruce Bloom, and Clare Thibodeaux from Cures Within Reach have returned with another post. This time, they explain how they bring researchers, older drugs, and new funders together to come up with new solutions for patients. Disclosure: I am a member of their Advisory Board, and think this concept is brilliant! … Continue reading A Place to Teach Old Drugs New Tricks