Sharing Skin-Selfies for Science: melanoma study releases participant generated smartphone data to research community worldwide

February 14, 2017

Sharing Skin-Selfies for Science: melanoma study releases participant generated smartphone data to research community worldwide

Mole photos, measurements, and melanoma risk factor data contributed by over 2,500 participants are made available by Sage Bionetworks and OHSU to accelerate skin cancer research.

February 14, 2017, SEATTLE–Sage Bionetworks and Oregon Health & Science University (OHSU) today publicly released data contributed by 2,798 participants in the Mole Mapper melanoma study. The app-based research study uses Apple’s ResearchKit to enroll participants who use the phone camera to map and measure their moles over time. Abnormal or changing moles can be an indicator of the skin cancer melanoma, so remote monitoring with the possibility of early detection holds great promise for cancer prevention.

Whereas most research data are generated in a clinical or laboratory setting, Mole Mapper is crowd-sourced by individuals contributing data to the study from their own phones. Curated Mole Mapper data, consisting of mole photos and measurements together with melanoma risk factors, have been made available to qualified researchers on Sage Bionetworks’ collaborative science platform Synapse and accompanied by a publication in Nature Scientific Data. This is the second such mobile health study that has been made broadly available to qualified researchers around the world.

“In designing the study, we first wanted to know if research run remotely and entirely through an app could find the same melanoma risks as years of rigorous epidemiology and genetics research,” said lead author Dan Webster, Research Fellow at the National Cancer Institute. “We show, for instance, that Mole Mapper participants with red hair were significantly more likely to be diagnosed with melanoma. This is in alignment with previously published data showing that people with red hair caused by mutations in the MC1R gene have a higher risk for melanoma.”

The study data also touches on a frequently asked question about moles: “Is this normal?” Stanford University researchers recently demonstrated that algorithms can accurately diagnose skin conditions by training on a large database of high-quality medical skin images. The Mole Mapper team aims to create a similarly foundational database from participant-contributed data. While clinical resources will undoubtedly be important in answering this question, most moles that are measured and monitored in a clinical setting are already suspect and may already be abnormal.

“With Mole Mapper, we have a unique ability to collect thousands of measurements from ‘pre-clinical’ moles that people measure themselves at home,” said Webster. “Over time, this can provide a basis for mole size and shape distributions to serve as a new benchmark for future studies.”

The release of the Mole Mapper study data is a part of the larger mobile health ecosystem that Sage Bionetworks is cultivating. Developing open-source modules for integration into mobile applications and enabling the broad sharing of the resulting data are cornerstones of this effort.

“In the promising space of mobile health, too often data is controlled by private interests,” said study coauthor Brian Bot, Principal Scientist, Sage Bionetworks. “Shared data resources such as these will help enable the scientific community to more quickly determine what can and cannot be gleaned from these types of remote measurements.”

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About Sage Bionetworks Sage Bionetworks is a 501(c) (3) 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