Posted on May 19, 2016
Margaret Tucker, M.D., Director of the Human Genetics Program, and her team of clinical and epidemiological staff have spent the better part of 40 years studying families predisposed to melanoma, a form of skin cancer, and documenting skin changes among participants in the NCI Familial Melanoma Study. One of their key findings is the association between total number of dysplastic nevi (DN), a specific kind of atypical mole, and risk of melanoma.
To help patients and the general public distinguish common moles, DN, and melanomas that started from DN, the study team collected photographs of 29 different pigmented skin lesions in the new website Moles to Melanoma: Recognizing the ABCDE Features. Geoffrey Tobias and Mary Fraser, R.N., M.A., curated the collection of case series, annotating each image with clinical descriptors and building a conceptual framework for the visual archive of the newly launched online tool. Each case series shows changes over time and across the various mole features typically seen among individuals from U.S. melanoma-prone families, chronicling the evolution of a DN to melanoma, or trending toward melanoma, or regression to a typical mole.
“Like so many important outcomes of epidemiologic research, we truly could not have done this work without the commitment and cooperation of the individuals in our family study,” said Dr. Tucker. “The Moles to Melanoma website allows us to bring this vital information into the 21st century by making it available to clinicians, patients, and the public.”
Similar to the atlas of lesions in melanoma-prone families in 2002, this site only includes images of individuals who are at the highest risk of developing melanoma (i.e. whites). Additional information, including resources for other racial and ethnic groups, can be found in the Intended Audience section.
The team conducted usability testing to ensure the site’s intended purpose was understood and that users could make best use of the tool’s unique features. The testing revealed several key opportunities for technical enhancements which the team used to improve the site.
The technical team was led by Mr. Tobias with support from Cliff Wong in the NCI Center for Biomedical Informatics and Information Technology. Financial support for the site came from the DCEG Informatics Tool Challenge. Finally, this project would not be possible if not for the skillful photographers at the NIH Clinical Center, John Crawford and Mary King.