Aiding Diagnosis

Clinicians can observe the features of a disease in a variety of cases and levels of disease severity. By showing what the features of a disease actually look like, the database can help clinicians recognize cases and make accurate diagnoses.

Supporting Research

Researchers can observe the course of a disorder, view case studies, compare different cases of a disease, and even compare the features of different diseases. This allows researchers to make observations and see connections that can serve as a powerful base for future research.

Sharing Knowledge

Patients, families and specialists can share their knowledge and expertise. Clinicians, researchers, and others from all over the world can easily explore questions in the Lexicon.

Collecting Video

One key component of the Clinical Picture Maker is the DAYTool - an online application which guides individuals with rare diseases and their caregivers to record and upload videos documenting all aspects of life with a rare disease. While traditional documentary camera crews can still be used to film the lives of individuals, the DAYTool offers an innovative new method for rapidly collecting video from a large group of people, allowing us to accelerate the creation of video documentation of rare disorders. The DAYTool also allows individuals to capture symptoms and behaviors in real time when and where they occur. 

Organizing & Validating Video

Once videos are collected, the Clinical Picture Maker offers a streamlined workflow for organizing, structuring, and validating video. Editors can add metadata such as symptoms shown in the video and topics related to the video. The videos and attached metadata are then reviewed by experts in the relevant domain. Once videos are validated, they are then published to the See System Rare Disease Video Database. 

Disseminating Video

Videos in the database can be searched and filtered depending on educational or research needs. In addition to conducting search queries based on diagnoses, symptoms, topics, and age, users can also view full case histories showing a timeline of a participant’s videos, as well as edited documentary clips and courses. Users can also save videos into Collections to return to view later. 

Learn more about the project, who's involved, and where we are in development.

 

If you are interested in participating, want to access videos in the See System Rare Disease Video Database, or have questions about the project, reach out to us.