Date Updated
EB Type
Recessive Dystrophic Epidermolysis Bullosa (RDEB)
Name of Company
Northwestern University
About the Study

This is a virtual research volunteer opportunity with Dr. Amy Paller, Dr. Antonia Reimer-Taschenbrecker (both at the Department of Dermatology), and Dr. Abel Kho (Institute of Augmented Intelligence in Medicine, I.AIM) at Lurie Children’s Hospital and Northwestern University, Chicago.

SCCs which rapidly metastasize are the main cause of death in adults with RDEB. The earlier an SCC is recognized, the easier it can be removed and the better the outcome. AI leverages computer science to perform tasks that typically require human intelligence and has recently been used to identify skin cancers based on images. We are currently developing an AI approach for early detection of SCC and distinction of malignancy from chronic wounds and other RDEB skin findings. The aim is to create a web application for patients with RDEB to upload images of their skin and get an output as to SCC present/ no SCC. This will be especially valuable for patients with difficult access to medical expertise and those who are hesitant to allow full skin examination at each visit, often because of fear of biopsies. Thus, this project will directly benefit patients by allowing early recognition of SCCs and will empower patients and their families by providing a home use tool.

So far, the project has mainly used professional images (photographs taken in hospital settings by physicians, nurses, and clinical photographers) of both SCCs in RDEB and images of RDEB skin without SCC to develop and train the AI model. The images that they expect in a real-life setting will mostly be pictures taken by patients or family members with their phones or digital cameras. These images have different properties regarding resolution, focus, lighting, and backgrounds. Incorporating such images will be crucial in the upcoming phases of model development—testing and validation—for the web application be a success for patients. 

If you qualify and decide to participate, you will be asked to complete the survey and upload photographs of your SCC(s) using the links below. Depending on the number of SCCs you’ve had and the number of photos you want to provide, the survey will take approximately 15-20 minutes to complete. Participation is entirely voluntary.

Trial Entry Criteria

This project will enroll adolescents and adults with RDEB and history of at least one SCC. The survey and consents will be provided in English, Spanish, German, French, Arabic, Chinese, Russian, and Hindi. We are inviting people with RDEB around the world to participate and are hoping that approximately 100 people will provide images.

Contacts & Location

This is a virtual research volunteer opportunity. To participate in the study, please click the link below.

Complete the Survey

For questions, please contact: Dr. Antonia Reimer-Taschenbrecker at

See All Clinical Trials