I've posted on CLLSociety.org an interview with Dr. Anthony Mato from U. Penn when we talked at ASH 2016 about the real-world research he has been doing patients being treated with ibrutinib both in the community and academic settings, and not just within clinical trials.
You can view my summary, watch the interview or read the transcripthere
Real world data is an important and challenging growing area of research, not just in CLL bit across many diseases
Here is a link to an interview withformerFDA commissioner Robert Califf, MD discussing the pros and cons of real world data and best practices for research.
I am very fortunate to be working with Dr. Mato on our CLL patient journey research survey.If you want a personal response, or just want to stay in touch, please email me at bkoffmanMD@gmail.com. I have no other way of contacting. Thanks. Stay strong. After all, we are all in this together. And please visit our website: http://cllsociety.org for the latest news and information.