Seattle, Washington-based, nonprofit biomedical research organization Sage Bionetworks, in collaboration with Oregon Health & Science University (OHSU) and National Cancer Institute cancer biologist Dan Webster, PhD, has announced the launch of “Mole Mapper” — a patient-centered iPhone app-based study — to quantitatively track moles and help detect early signs of malignant melanoma (the deadliest form of skin cancer) and determine whether digital images taken on an iPhone can be used to learn about mole growth and melanoma risks and could help people better manage skin health by photographing and measuring mole size over time to better understand skin biology and melanoma risks.
If you are 18 or older, Mole Mapper gives you the option to participate in the research study. Dr. Webster is lead developer of the Mole Mapper app, which is available for free download immediately from the Apple App Store.
Keeping track of the size, shape and color of moles on your skin is the best way to catch potential skin cancers like melanoma in their early stages when they’re most treatable. The Mole Mapper app is a personalized tool to help the user map, measure, and monitor skin moles. Mole Mapper can be used to keep track of the appearance, size, shape, and location of a single suspicious mole over time or to construct a full-body map to help catch early signs of melanoma. The app is designed to make being vigilant about your health a bit more interesting and enjoyable. Using a familiar Apple Maps-like interface, you can measure the size of a mole using the camera and a common reference object like a coin.
Study participants can choose to share their personal Mole Mapper information with their physicians, through the app’s Apple ResearchKit framework, and can opt to donate their images and some basic health information to drive future research on early detection of melanomas. The provision of de-identified mole data images captured by tens of thousands of iPhone users around the globe will help scientists create detection algorithms that can be used in future studies to potentially screen for melanoma images, and will provide researchers with information and help answer basic questions about how melanoma develops.
Mole Mapper study leaders and sponsors of the research arm of Mole Mapper are Sage Bionetworks president Stephen Friend, MD, PhD and Sancy Leachman, MD, PhD, a professor, Chair of Dermatology, and Director of the Melanoma Research Program at the Oregon Health & Science University’s Knight Cancer Institute.
“Melanoma is the poster child for early detection. If we can identify melanomas earlier by creating a simple way for patients to share images of their moles, we can learn more about the progression of the disease,” says Dr. Leachman. “Expanding our pool of research participants is a critical step in gaining the information we need. ResearchKit makes this easier than ever with the development of a simple iPhone app.”
Early detection is key to improving melanoma survival. The American Cancer Society (ACS) estimates that currently more than 135,000 new cases of melanoma are detected each year in the United States, with risk in those over 40 years of age apparently increasing as the sun-worshipping baby boomers and Generation Xers age. Moles, brown spots, and skin growths are usually harmless, but according to the ACS people with over 100 moles are at increased risk of developing melanoma.
Sage Bionetworks brought together OHSU, a leader in melanoma research at the forefront of educating patients about current research and educational opportunities focused on early detection, prevention and survivorship through its War on Melanoma Community Registry, and Dr. Webster, who originally conceived Mole Mapper as a way for users to keep track of moles between visits to the dermatologist. Dr. Webster, then a novice programmer, developed the first version of the Mole Mapper app while completing his PhD at Stanford University and conducting basic research on melanoma biology.
“My wife has a variety of risk factors for developing melanoma, and we would keep track of her moles by taking pictures,” Dr. Webster explains in a Sage Bionetworks release. “I thought, there should be an app for this,” and describes the years that followed as “a lot of genome engineering by day and software engineering by night.” Beginning in late 2014, working first with Sage and subsequently also with OHSU, Dr. Webster has transformed the app into a research study to help answer pivotal questions about melanoma risk and development.
“One of the most important melanoma risk factors is how a mole is evolving over time, but nobody really measures that in a quantitative way,” says Dr. Webster. “Using Mole Mapper we’re attempting to understand when a mole is watch-and-wait and when it requires the attention of a dermatologist, and to understand the basics of how moles change as a proxy for increased risk of melanoma. Until now, there wasn’t [any] large, systematic study that asks how much change is dangerous, or whether that change matters more or less depending on where a mole is located on the body.”
The launch of the Mole Mapper research study builds on the success of Sage’s previously announced app-based research studies Parkinson mPower and Share the Journey. Those studies, with the participation of more than 20,000, began in March 2015 to investigate symptom variation in Parkinson’s disease and improve the quality of life for women who have been treated for breast cancer.
Like Sage’s mPower and Share the Journey, the Mole Mapper study is underpinned by Sage’s Apple ResearchKit enabled, Web-based, open-source Bridge research platform, which enables design and recruitment of large, dynamic, and collaborative mobile app-based research studies, and facilitates making the results of that research available for further analysis.
Sage has made Bridge available to researchers worldwide who, along with research participants, can help create the kind of highly relevant datasets on individuals and their environments that are missing from traditional research.”Sage’s platforms continue to empower researchers like Dan Webster to pursue interesting questions at the intersection of mobile technology and basic research in a way that can be meaningful and important,” says Andrew Trister, MD, PhD, senior physician at Sage Bionetworks. “By putting individuals experiences at the center of the research process, researchers working in virtual teams can efficiently and inexpensively tap into high-quality data streams.”
Mole Mapper also further validates Sage’s Participant-Centered Consent platform, which the organization describes as a first-of-its-kind, institutional review board-approved interactive process for electronically gaining informed consent from research participants. The e-consent process is a unique, robust, and ethical way to recruit participants into low-risk research studies.
Researchers and developers using the open source software framework continue to contribute to Apple ResearchKit with new modules, active tasks and custom surveys, and the Active Task module enables researchers to gather more targeted data for their studies by inviting participants to perform activities that generate data using their iPhone’s advanced sensors. Initial Active Task modules include tasks to measure motor activities, fitness, cognition and voice.
Apple reports that in just six months, more than 50 researchers have contributed active tasks to support new methods of research, including tasks to study tone audiometry for hearing loss; the ability to measure reaction time through delivery of a known stimulus to a known response; a timed walk test; PSAT to assess the speed of information processing and working memory, and the mathematical puzzle Tower of Hanoi which is often used for cognition studies. Additional contributions to the ResearchKit framework include iPad support, image capture and the ability to add pie charts, line graphs and discrete graphs for more detailed dashboards.
Sage Bionetworks 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. Sage’s Bridge research platform is supported by funding from the Robert Wood Johnson Foundation and The Leona M. and Harry B. Helmsley Charitable Trust.
To learn more about existing studies using ResearchKit, visit http://www.appstore.com/researchkit. ResearchKit studies are available in Austria, China, Germany, Hong Kong, Switzerland, the U.K., and the U.S.
For more information, visit:
Oregon Health Sciences University
The American Cancer Society