Share The Journey:
Mind, Body, and Wellness after Breast Cancer

BECOME A
RESEARCH
PARTNER.

You can help make a difference.

About this Study

How can we better manage the symptoms after breast cancer treatment together? Sage Bionetworks, a 501(c)(3) nonprofit research organization, invites you to volunteer in a new approach to monitor health in women using mobile apps. Share the Journey: Mind, Body and Wellness after breast cancer is a clinical study that aims to understand the symptoms after breast cancer treatment, why these symptoms vary over time, and what can be done to improve them.

New technologies allow people to record and track their health and symptoms in real time. Share the Journey will use surveys and phone sensor data to collect and track five common symptoms that can persist after breast cancer treatment: fatigue, mood and cognitive changes, sleep disturbances, and reduction in exercise. Some participants will be invited to keep a health diary. The app will allow you to track these symptoms and others of your choosing, review trends, and provide your insights to researchers and the breast cancer community about how your symptoms might change day to day. This study is unique in that it allows participants to step up as equal partners in both the surveillance and management of their symptoms as well as in the research process.

How this Study Works

The Share the Journey app will ask you to answer questions about yourself, your medical history, and current health. The app may ask you to perform specific tasks while using your mobile phone, such as to provide a journal about your week with symptoms. To better understand the way that your symptoms are affecting your life, we will ask you permission to collect data from your phone itself, such as how much you move in one day. Providing this information is optional.

Our goals are to understand the causes of the symptom variations after breast cancer treatment; to learn how mobile devices and sensors can help us to these symptoms and their progression; and to ultimately improve the quality of life for people after breast cancer treatment.

If you decide to join the study you will need to download the free study application on your mobile device, register an account and confirm your agreement to participate in this study. Then, periodically we will ask you to answer questions and/or perform activities on your mobile phone. These questions may be about your health, fatigue, mood, cognitive changes, sleep or exercise. We will send notices on your phone asking you to complete these tasks and surveys. You may choose to act at your convenience, (either then or later) and you may choose to participate in all or only in some parts of the study. These tasks should take you about 20 minutes each week. You have the right to refuse to answer particular questions or participate in particular aspects of the study.

Your study data will include your responses to surveys, your journal entries about your week with symptoms and some measurements from the phone itself when you perform an activity. A unique random code will be associated with your study data instead of your name. Your data, without your name will be added to the data of other study participants and analyzed by the study team. Also, if you choose to, your study data (without your contact information) can be made available to other qualified researchers for this and future research. You will have a unique account that you can use to review your own data.

Download the mobile app

The mobile app will help you log your symptoms.

Perform simple tasks

We’ll ask you to do a few tasks and answer some questions about your health.

Track your health

You can use the health dashboard to track your health data.

Scientists make discoveries

Scientists will use your data to make breakthroughs in medical research and treatments.

Who is Eligible to Participate

If you are a woman aged 18 and 80 years with a history of breast cancer or without a history of any cancer, we invite you to join the study. You need to be a U.S. resident and have a personal iPhone to participate.

Who is Running this Study

This study is sponsored by Sage Bionetworks, a 501(c)(3) nonprofit research organization with funding from the Robert Wood Johnson Foundation. It was developed with guidance from our advisory board (Drs. Patricia Ganz, Kathryn Schmitz and Ann Partridge).

Principal Investigator

Stephen H. Friend, MD, PhD
Sage Bionetworks (nonprofit)

Advisors

Patricia Ganz, MD
UCLA’s Jonsson Comprehensive Cancer Center

Kathryn Schmitz, PhD, MPH, FACSM
Perelman School of Medicine, University of Pennsylvania

Ann H. Partridge, MD, MPH
Dana-Farber Cancer Institute

© 2015 Sage Bionetworks · Privacy Policy · Support · Share The Journey is for research use only and does not provide medical advice, diagnosis or treatment.