If you, or someone you know, was diagnosed with Her2+ metastatic inflammatory breast cancer (or standard Her2+ metastatic breast cancer) in the last 6 months, you might want to explore an exciting opportunity to participate in a long-term research project: the SystHERs Registry. 

A registry differs from a clinical trial in many ways.  A registry collects data but doesn't dictate treatment.  In contrast, a clinical trial is usually designed to compare one treatment against another to determine efficacy.

The pharmaceutical company, Genentech (a member of the Roche Group) has been involved in a number of registry projects. As more Her2 targeted therapies have been developed, data has shown the landscape has changed for those with Her2+ disease, so Genentech decided to start a new registry to specifically study Her2+ metastatic breast cancer.  Hence SystHERs Registry came into being.

The Registry has a steering committee made up of practicing oncologists, two advocates, and a variety of Genentech staff, and various vendors involved in managing the electronic capture of data and working with the various sites involved in the study.  Musa Mayer, of advancedbc.org and I are the two advocates, representing the patient voice on the steering committee.  We're primarily involved in the PRO's (patient reported outcomes) but have a very active voice in all aspects of the project.  A number of publications are expected to come from the project and we've already submitted at least one paper for publication and will no doubt have posters at the major cancer conferences to share what we're learning.

When I joined the steering committee and learned that inflammatory breast cancer patients would be welcomed in the registry, I realized what a great opportunity this would be to finally collect data from IBC patients who are so often excluded from trials.  The PRO's are especially important as those instruments are completed by the patient and provide an opportunity for the patient to share, first hand, about their experience.  Financial data, work status, pain, hair loss, neuropathy, and a host of other topics are covered.  I don't think this kind of data exists, especially collected long-term, on any IBC patients.

At a recent meeting of investigators and site coordinators, along with a few members of the steering committee, we received updates on enrollment and the switch to electronic documentation of PRO's.  It was exciting to learn that 305 participants have enrolled with a goal of 1000 by 2015 (first enrollments were in June 2012).  There are now 125 sites enrolling patients across the country.  With the goal of following patients for as long as 8 years (for those who enrolled early) this is an amazing chance to learn about life with Her2+ metastatic breast cancer. 

If you, or someone you know, qualifies for the SystHERs Registry, I hope you'll consider participating. 

For additional information:

ClinicalTrials.gov "An Observational Study in Patients With HER2 Positive Metastatic Breast Cancer (SystHERs Registry)"

Genentech: http://www.systHERs.com  

[Editor's note: please share this information with others, either forward this newsletter or share on social media!]  

When: February 21-23, 2014
Where: Hilton Orlando Lake Buena Vista, Orlando, FL

Jointly hosted by Living Beyond Breast Cancer and Young Survival Coalition, this energetic conference addresses the needs of women diagnosed with breast cancer under the age of 45.  Emphasis is on support, connections and information.

For the 5th consecutive year, the Inflammatory Breast Cancer Research Foundation will be in the Exhibit area. Executive Director Ginny Mason and Board member Carol McWilliams will be present. Stop by to say "hello" and find out the latest in IBC research.

C4YW's general sessions and workshops provide current and important information in an atmosphere of interaction between attendees and experts in breast cancer research and care. Whether newly diagnosed, in treatment, years beyond your diagnosis and/or living with metastatic breast cancer, there's much of interest at C4YW.

New for 2014 are discussion groups led by health care professionals. Some of the topics will include: Confronting Mortality at a Young Age, Sex and Intimacy, Caregiving, Single and Dating, and Living with Metastatic Breast Cancer as a Young Woman. 

See you in Orlando! 

It was exciting to have WRAL-TV (Raleigh, NC) do a story on Dr. Mark Dewhirst and the IBC skin mets research being funded by the Inflammatory Breast Cancer Research Foundation. View the video.

This research grant started with a generous donation from Kathleen Livingston (hence the Kathleen Livingston Memorial Grant) and her husband Peter. In addition, caring donors provided additional support to bring the grant to $50,000!

Our sincere thanks to all who made this important research possible. If you missed the announcement of this research grant in the January newsletter, view it here.