Sanofi US Announces Collaborate Activate Innovation Challenge Winner Registries for All Diseases wins $300k to create crowdsourced cross-disease registry.

Bridgewater, NJ - December 12, 2012 - Sanofi US announced today that Registries for All Diseases has been selected as the winner of the Collaborate Activate Innovation Challenge.

Registries for All Diseases will receive an award of $300,000 to create a comprehensive, crowdsourced, cross-disease registry to help accelerate translational research for over 1,000 diseases. The team consists of partnering organizations Genetic Alliance, CFIDS Association of America, National Psoriasis Foundation, and the Inflammatory Breast Cancer Research Foundation.     

Holding the check are L to R: Ellen Gudewill, Sanofi; Ginny Mason; Anne Whitaker, Sanofi; Sharon Terry, Genetic Alliance; Suzanne Vernon, CFIDS Assoc. of America

"Data can accelerate research and services, help us get better patient outcomes, and save money," said Sharon Terry, President and CEO of Genetic Alliance, "But right now, this data is in silos and is not easily accessible to researchers. By creating a patient-centered research network that spans many diseases, people will be empowered to participate in their own health and can contribute data to advance the development of disease treatments." The registry infrastructure will include robust privacy controls, allowing individuals to allow or decline access to data requests.

Registry for All Diseases was one of four teams selected to partake in the final phase of Collaborate Activate. Each of the finalists received a $25,000 award and mentorship from Sanofi team members and healthcare experts, drawing on the mentors' insight to refine their solutions before presenting to the judges. This phase afforded the finalists the unique opportunity to access Sanofi's expertise in preparation for a Finalist Event at the Newseum in Washington, DC, during which each team presented its solution to an independent, expert panel of judges. Sanofi received submissions from over 280 partnering organizations for solutions to help patients engage in their health across a broad range of therapeutic areas.

"Collaborate Activate embodies our commitment to improving health outcomes for patients by uniting the advocacy community to accelerate innovation," said Anne Whitaker, President, North America Pharmaceuticals at Sanofi US." Registries for All Diseases exemplifies the collaborative nature of the challenge by creating a multi-tiered solution that captures both common data across all diseases and disease-specific data, showcasing the expertise of each partnering organization."

Collaborate Activate is an initiative of Sanofi's Partners in Patient Health, which first announced the challenge in May 2012 at an event in Washington, DC. The challenge required two or more groups to collaborate in order to qualify for the contest and designed to promote sharing of complementary resources among partnering organizations."

Creating a registry of patients is the single most valuable action a rare disease community can take," said David Meeker, MD, President and CEO of Genzyme, a Sanofi company. "The registry provides critical disease knowledge which makes that disease easier to study, increasing the probability a treatment can be developed. We congratulate the Registries for All Diseases team."

Sanofi US established the challenge with the belief that bringing together patient advocates creates a multiplier effect, and leads to innovative ideas that would not otherwise be possible. Registries for All Diseases proves how powerful this multiplier effect can be: together, the team intends to reach over 9,000 health organizations and 1,200 disease advocacy organizations. Utilizing data from such a broad network has the potential to have a tremendous impact on patient outcomes.

To learn more about the Challenge, visit http://www.collaborateactivate.com, or visit the Collaborate Activate blog.

(this article contains excerpts from a press release prepared by Sanofi US and Genetic Alliance)

The San Antonio Breast Cancer Symposium (SABCS), is a joint presentation of the Cancer Therapy & Research Center at the University of Texas Health Science Center at San Antonio, the American Association for Cancer Research, and Baylor College of Medicine.  Highlights of this year's conference included advances in the value of molecular profiling, answers to evolving issues around surgical management, notable successes in trials of new agents such as TDM-1, and more on the optimal use of endocrine therapy.  The symposium combines basic science and translational research across a wide range of topics.  Posters and presentations focused on such issues as genomics, sequencing and associated technologies, the role of cancer stem cells in the metastatic process, and genome-based associations of treatment toxicities.  This was my 10th or 11th time to attend this meeting and while overwhelming at times, I continue to find it one of the most important for keeping me up to date on breast cancer research and treatment.

For five days about 8,000 participants, from all over the world, attended six general sessions of oral presentations, nine poster sessions, and poster discussion sessions for in depth presentations on a particular topic.  Additionally there were four invited plenary talks, several award lectures, three mini-symposia, clinical and basic science forums and case discussions, and two special reports. Advocates were invited to evening mentor sessions, hosted by the Alamo Breast Cancer Foundation, where breast cancer experts shared their interpretation of the day's presentations.  Added to this grueling schedule were evening special educational programs, advocacy briefing sessions, and those all important "hallway consultations" resulting quickly in exhaustion!

"The Year in Review", now a regular Saturday morning highlight, brought together a panel of distinguished speakers whose information packed reports provided the "Readers Digest" condensed version of major developments in breast cancer during the past year.  Once the SABCS sessions are available on-line, this is certainly one to watch.

As usual, IBC was not a significant topic at the symposium however, there were quite a few posters and a couple mentions during talks in the large hall.  Many of the IBC posters had been presented at the International IBC Conference the weekend before SABCS in Philadelphia.  The timing of the IBC Conference allowed international participants to attend both meetings more conveniently.

Dr. Robert Schneider of New York University presented his work "Translating regulation of mTOR and protein synthesis to the clinic for advanced breast cancer", and acknowledged the Inflammatory Breast Cancer Research Foundation for funding support.  He focused on targeting mTOR in the treatment of IBC and spoke of clinical trials in development.  Again on Thursday, during the AACR Outstanding Investigator Award for Breast Cancer Research, Kornelia Polyak, MD, PhD of Dana Farber Cancer Institute, included data from her preclinical work on the JAK2 STAT3 pathway and it's importance in IBC.  This work is moving to clinical trial in early 2013, headed by Dr. Beth Overmoyer and funded by a grant from the Inflammatory Breast Cancer Research Foundation.  These were indeed highlights for the Foundation during the symposium!   

Dr. Beth Overmoyer talking to a young researcher from NYU about her poster on the JAK2 STAT3 work at Dana Farber Cancer Institute

News of interest to IBCers and the broader breast cancer community from the symposium included new data from three well known traztuzumab (Herceptin) trials (the NSABP & NCCTG trials and the HERA trial).  These data show the long-lasting benefit for adjuvant trastuzumab.  Additional data from HERA and PHARE reinforced the use of trastuzumab for a full year, the typical practice in the U.S.  The ATLAS trial (Adjuvant Tamoxifen, Long Against Short) answered some important questions regarding the duration of tamoxifen treatment.  The trial showed that 10 years of therapy is superior to five when looking at overall survival (OS).  While the difference was small, perhaps the next round of study, comparing sequential SERMs (Selective Estrogen Receptor Modulator) or SERM + AI (Aromatase Inhibitor) will provide more guidance to clinicians.  Some new evidence suggested that fulvestrant given in a larger dose on a monthly basis improved progression free survival with very little added toxicity.  Targeting the estrogen receptor is one of the first true 'personalized therapies' and presentations at this year's symposium show that there is still a lot to learn to optimize these compounds.

Dr. George Sledge shared the following in a recent Oncology Times article, "Science magazine identifies a 'molecule of the year' every year.  If I had to do this for San Antonio, I would choose PI3K, in large part for its Zelig-like ability to show up in every tumor type, and take on a different personality in each case."  A recent New York Times article also speaks to the importance of studying molecules or pathways that are important in multiple tumor types in an effort to bring new treatments to the bedside in a timely manner.  This is especially important for less common forms of cancer, like IBC.  Companies may be hesitant to invest time and money in therapies for those cancers alone.  PI3K is certainly one such molecule, mutations may have importance in some ER-positive breast cancers, some Her2-postive disease and may even be a target for treatment in triple negative breast cancer (TNBC).  Stand Up to Cancer (SU2C) has assembled a "Dream Team" to focus on PI3K in women's cancers (breast, ovarian, and endometrial cancers).  Clinical trials are underway as this collaborative group explores the role of PI3K in these solid tumors.

No doubt one could go on and on picking and choosing specific topics to highlight.  Instead I'll direct you to the symposium website http://www.sabcs.org and encourage you to visit the website for more information on your topic(s) of interest.  In addition, Living Beyond Breast Cancer is offering a teleconference: News from the San Antonio Breast Cancer Symposium on January 9th.  See the calendar for more information.

For yet another take on the Symposium, visit Breast Cancer Advocate, a blog by Laura Nikolaides of the National Breast Cancer Coalition.  In this blog Laura gives her typical thoughtful interpretation of the science presented and some details I only touched on above.  

Inflammatory breast cancer clinicians, advocates, and researchers gathered at the Sofitel Philadelphia on Dec. 1 & 2, 2012 to share current research and treatments as well as problems in the IBC community.  Conference participants were welcomed by Margaret Foti, Phd of the American Association for Cancer Research (AACR), Fran Visco, JD from the National Breast Cancer Coalition, Elaine I. Grobman representing the local Susan G. Komen for the Cure and Senator Timothy Z. Jennings from the New Mexico State Senate.  Gayla Little, Board member, and Ginny Mason, Executive Director, represented the Inflammatory Breast Cancer Research Foundation at the conference.

Following a plenary lecture on tumor metabolism and a session on epidemiology the first evening, representatives from various advocacy groups in attendance were given a few minutes to tell about the organizations' mission and accomplishments.  A poster display and reception gave conference attendees an opportunity to network and learn about IBC research projects being done in both the U.S. and other countries.

Things began again early on Sunday morning with breakfast and concurrent sessions.  Nurses, Allied Health Professionals and Advocates were encouraged to attend a session lead by a nurse practitioner from M. D. Anderson, along with a panel discussion.  IBC Research Update was the title of the other concurrent session designed for the clinicians and researchers.  Dr. Patricia Steeg of the National Cancer Institute presented work on IBC brain metastasis.  This was particularly exciting for the Inflammatory Breast Cancer Research Foundation since this research was funded by one of our first grants to Diane Palmieri, PhD, a colleague of Dr. Steeg's.  The remainder of the morning was dedicated to brief presentations on various IBC research subjects.  Dr. Neil Spector of the Duke Cancer Institute provided the next plenary focusing on the Evolving HER-2 Targeted Therapies in Breast Cancer: Lessons for IBC.  As always Dr. Spector provided a comprehensive overview of HER-2 directed therapy development and how resistance to these therapies can be managed in the clinic.

The conference closed with an informal roundtable discussion.  This was the third time individuals in the international IBC community have come together to present and discuss research and treatment of the disease.  At the first gathering in 2008 in Houston, TX, discussion focused on developing a collaborative group to move research forward more quickly.  This discussion continued at the second gathering in Marseille, France in 2010.  Again this topic dominated the conversation and the development of a non-profit organization began to take shape.  At this time it is unclear what will develop but it is a step toward more purposeful collaborative efforts.

The Inflammatory Breast Cancer Research Foundation, along with others, provided an educational grant that provided support for this continuing medical education activity.  Executive Director Ginny Mason RN, BSN participated as a member of the Clinical Committee for the conference.