Development and Validation the Craniofacial Scleroderma Photo Atlas

Project Period:

Grant Category:
Small Grant

Disease Area:
Scleroderma, SVARD

Craniofacial Scleroderma (CS) is a rare disease that involves progressive damage to the skin and structures of the head, neck, and face. Because clinical assessment of CS is based on changes in examination of facial appearance over multiple clinical visits, it is important to have a standard way to assess the face and the severity of disease affecting different regions. Unfortunately, no such standard inventory currently exists for this type of scleroderma affecting the head, neck, and face. Our group has collaborated with other pediatric scleroderma centers to aggregate patient photos into one centralized reference photo atlas. The goals of this project are to create and validate the photo atlas that can be a standardized reference tool available to all rheumatologists, dermatologists, plastic surgeons, and any other involved caregivers.


Ingrid Ganske, MD, MPA

Boston Children's Hospital

Ruth Ann Vleugels, MD, MPH, MBA

Brigham and Women's Hospital, Inc.

Fatma Dedeoglu, MD

Boston Children's Hospital