SEATTLE--(BUSINESS WIRE)--Sage Bionetworks, together with collaborators Patricia Ganz, MD, at the University of California Los Angeles, Kathryn Schmitz, PhD, MPH, at the University of Pennsylvania, and Ann Partridge, MD, MPH, at Dana-Farber Cancer Institute, today announced the launch of Share the Journey: Mind, Body, and Wellness after Breast Cancer, a patient-centered, iPhone app-based study of the causes of symptom variations in the breast cancer community. The study is sponsored by Sage with funding from the Robert Wood Johnson Foundation.
Share the Journey uses the new ResearchKit software framework announced today by Apple to make it easy for researchers to gather data more frequently and more accurately from participants using iPhone apps. ResearchKit enables participants to easily complete tasks or submit surveys right from the Share the Journey app and delivers a simple way to present participants with an interactive informed consent process. Share the Journey utilizes Sage Bionetworks’ Bridge server platform.
Women who have undergone surgery, radiation, or drug therapy to treat breast cancer may experience symptoms that affect quality of life and impede recovery. Participants in Share the Journey will be prompted to set personal exercise goals and write about activities that may positively or negatively affect their symptoms. By collecting this and other data from iPhone sensors, participant surveys, and health diaries, Share the Journey tracks five common consequences of breast cancer treatment: fatigue, cognitive difficulties, sleep disturbances, mood changes, and reduction in exercise performance.
Participants will also be asked for feedback on how to enhance the study or better reflect their interests. These tasks and surveys should take no more than 20 minutes per week, and women who take part can participate in every aspect of the study or in only elements of their own choosing. Collecting women’s experiences after breast cancer treatment in this unique study can create a trove of data based on well-validated surveys and measurements continuously improved upon based on feedback from study participants.
“One reason to build these apps and run these studies is to see whether we can turn anecdotes into signals, and by generating signals find windows for intervention,” said Stephen Friend, MD, PhD, president of Sage Bionetworks and Share the Journey principal investigator. “We’re most interested in disease variations, and the hourly, daily, or weekly ebb and flow of symptoms that are not being tracked and completely missed by biannual visits to the doctor.”
“Researchers who have made the effort to work together in the kinds of communities enabled by Sage’s platforms are becoming massively more productive,” said Friend. “But we need more data. In a traditional clinical study, you’d be thrilled to find 500 research ‘subjects.’ But imagine what is possible when you can quickly and reliably activate 20,000 research ‘partners.’ Similarly, gathering data a few times per year is the traditional gold standard, so imagine the possibilities when we are able to gather data continuously, all the time.”
Share the Journey is open to women in the U.S. between the ages of 18 and 80, with or without a history of breast cancer. Women without a history of breast cancer will contribute important data to Share the Journey that will help researchers understand which symptoms may be related to previous cancer treatment and which may be part of the normal aging process. A Spanish-language version of the app and efforts to expand the study to additional geographies are under development. Sage and its collaborators are also working to extend the study to include men who have been treated for breast cancer.
“Because of the successes of early detection and better cancer treatments, we’ve created a situation where there are now 14 million cancer survivors, many of whom will live for decades as a brand-new chronic disease population,” said Kathryn Schmitz, PhD, MPH, Professor of Epidemiology, University of Pennsylvania Perelman School of Medicine. “Patients don’t often know they should be expecting these sometimes persistent adverse effects. They don’t know, or they simply believe that it’s just what they should expect and there’s nothing that can be done about it. The Share the Journey app is a tool that may help breast cancer survivors become more empowered to care for themselves.”
“We need to better understand some of the long-term negative treatment effects, such as fatigue, that can be associated with the disease control benefits of cancer therapies. What are the biological mechanisms that underpin those effects and why some survivors are more vulnerable to those effects than others,” said Patricia Ganz, MD, professor at the UCLA Fielding School of Public Health and Director of Cancer Prevention & Control Research at UCLA’s Jonsson Comprehensive Cancer Center. “With Share the Journey, women can tell us when something’s wrong, and the app has the potential to capture valuable information on the patient experience. Our current cancer care system lacks the ability to predict or treat these chronic and enduring symptoms, but Share the Journey can set us on a path toward understanding why some people recover and some do not.”
“This is a beautiful marriage of technology and medicine, and a potentially extraordinary resource for research and for learning about how what people are doing day-to-day may affect their post-treatment symptoms,” said Ann Partridge, MD, MPH, Founder and Director, Program for Young Women With Breast Cancer, Director, Adult Survivorship Program, and Senior Physician at Dana-Farber Cancer Institute. “For breast cancer survivors, this is an opportunity to work on improving health by harnessing a technology that is already part of their daily lives, where their experiences can be shared with the broader breast cancer community so they can support each other and learn from each other.”
"Dana-Farber is very excited about any tool designed to help survivors map out a clearer plan for living well after cancer. For our patients in particular, this tool holds the potential to be a strong complement to Dana-Farber’s existing survivorship services, which help survivors build an exercise plan, improve sleep habits, learn mindfulness techniques, and much more. We are also excited to learn in real-time from the experiences of patients using the app, which will be a very powerful research tool to ultimately improve how we counsel patients about what helps and what doesn’t help after cancer treatment," said Partridge.
About Share the Journey
Share the Journey: Mind, Body, and Wellness after Breast Cancer, available for download on the App Store, is a patient-centered, mobile app-based study of the causes of symptom variations in breast cancer treatment side effects. Share the Journey tracks five common side effects of breast cancer treatment: fatigue, cognitive difficulties, sleep disturbances, mood changes, and reduction in exercise performance with a goal of providing patients improved post-treatment quality of life. Share the Journey was developed by Sage Bionetworks, led clinically by senior physician Andrew Trister, MD, PhD, and led technically by director of technology and software development Michael Kellen, PhD, using the Bridge Server software developed by Sage.
Share the Journey was created in collaboration with Patricia Ganz, MD, at the University of California Los Angeles, Kathryn Schmitz, PhD, MPH, at the University of Pennsylvania, and Ann Partridge, MD, MPH, at Dana-Farber Cancer Institute and with funding from the Robert Wood Johnson Foundation. The team was advised by Judy Garber, MD, MPH, at Dana-Farber Cancer Institute and Susan Love, MD, at UCLA and the Dr. Susan Love Research Foundation.
About Sage Bionetworks
Sage Bionetworks is a nonprofit biomedical research organization, founded in 2009, with a vision to promote innovations in personalized medicine by enabling a community-based approach to scientific inquiries and discoveries. Sage Bionetworks strives to activate patients and to incentivize scientists, funders and researchers to work in fundamentally new ways in order to shape research, accelerate access to knowledge and transform human health. It is located on the campus of the Fred Hutchinson Cancer Research Center in Seattle, Washington and is supported through a portfolio of philanthropic donations, competitive research grants, and commercial partnerships. More information is available at http://www.sagebase.org.
About the Robert Wood Johnson Foundation
For more than 40 years the Robert Wood Johnson Foundation has worked to improve health and health care. We are striving to build a national Culture of Health that will enable all to live longer, healthier lives now and for generations to come. For more information, visit www.rwjf.org. Follow the Foundation on Twitter at www.rwjf.org/twitter or on Facebook at www.rwjf.org/facebook.
About UCLA's Jonsson Comprehensive Cancer Center and UCLA Fielding School of Public Health
UCLA's Jonsson Comprehensive Cancer Center has more than 240 researchers and clinicians engaged in disease research, prevention, detection, control, treatment and education. One of the nation's largest comprehensive cancer centers, the Jonsson center is dedicated to promoting research and translating basic science into leading-edge clinical studies. In July 2014, the Jonsson Cancer Center was named among the top 10 cancer centers nationwide by U.S. News & World Report, a ranking it has held for 14 years.
The UCLA Fielding School of Public Health, founded in 1961, is dedicated to enhancing the public's health by conducting innovative research, training future leaders and health professionals from diverse backgrounds, translating research into policy and practice, and serving our local communities and the communities of the nation and the world. The school has 600 students from more than 35 nations engaged in carrying out the vision of building healthy futures in greater Los Angeles, California, the nation and the world.
About Dana-Farber Cancer Institute
Dana-Farber Cancer Institute, a principal teaching affiliate of Harvard Medical School, is world-renowned for its leadership in adult and pediatric cancer treatment and research. Designated as a comprehensive cancer center by the National Cancer Institute (NCI), it is one of the largest recipients among independent hospitals of NCI and National Institutes of Health grant funding. For more information, go to www.dana-farber.org.