Thursday, August 6, 2015

CLL Biorepository for Research and Comments on Chemo from Patient advocates


This week we finally learned why they need so much blood of ours every time we are seen at a research center. We learned what a biorepository is and how it is changing how CLL research is done.

Donna Neuberg, Sc. D. from Dana Farber Cancer Institute is the director of biostatistics for the CRC (CLL Research Consortium). In an interview from the CRC research meeting on April 24 and 25 that followed the April 23 patient meeting, I asked her the burning question: What exactly do they do with the 10 extra tubes of blood they draw at every clinic appointment at a research center?

The short answer: They put them on ice!

Her more detailed response and discussion of the research made possible by this amazing resource, the CRC's CLL biorepository, is eye opening. She also talks about privacy issue and the reasons for the patients' very limited access to their own research results. This interview gives you a peek under the hood of how longitudinal research is done and why serial blood samples are so helpful.

As patients, we may never meet Dr. Neuberg but the stewardship she is providing to get the most research benefit out of our precious blood samples is moving us closer to a cure.

The link to my interview with Dr. Neuberg is

 Also new on the website this week is a thoughtful discussion here ( of the risks and benefits of chemotherapy. CLL patient Terry Evans argues convincingly not to reject BR or FCR and other chemotherapy regimens out of hand, but rather to consider their potential role dispassionately and Karl Schwartz from Patients against Lymphoma points out some of the under-recognized beneficial effects of chemotherapy on our immune system, perhaps as a form of immune priming. I have also included a link to my prior discussion of the nature of the particular chemotherapy that is used in CLL. Check out the opinions of two very knowledgeable patient advocates and share with us your opinions.

Stay strong.

We are all in this together.

Brian Koffman
Volunteer Medical Director of the CLL Society Inc.


Post a Comment

Subscribe to Post Comments [Atom]

<< Home