Welcome to the SeeSystem

The SeeSystem Video Database of Rare & Difficult-to-Diagnose Disorders is a video library providing rich, detailed visual documentation of many different disorders. The videos in this library document all aspects of life with rare and difficult-to-diagnose diseases, including the symptoms, challenges, and experiences, of individuals living with them.

Learn more about what SeeSystem videos show.

A Reference and Education Tool:

The videos can show clinicians, researchers and families what the symptoms and characteristics of different rare diseases look like, helping them to better recognize and diagnose cases and understand how the symptoms impact patients. Assessments given in an unfamiliar office may not capture the range of a person’s abilities or disabilities that video taken in a home setting can. Videos can also show strategies that caregivers or adults with the disorder can use to manage the condition and can bring people dealing with the same disorder together for mutual support. Additionally, when the same participant contributes videos taken over a span of time, the videos can help illustrate the progression of a disorder, showing how symptoms change over time. Or video of individuals with the same disorder but different manifestations can reveal the range of presentations for a particular rare disease.

A Tool To Support Research:

A set of videos of people with a particular rare disorder can be useful to researchers and pharmaceutical companies developing interventions by revealing potential end points and quality of life measures. Also, videos showing symptoms of a specific disorder could be analyzed and compared with videos of other disorders for research aimed at understanding similarities and differences between disorders with related symptoms. As mentioned above, participants can record new videos over time to show how symptoms change, providing critical data for natural histories. Additionally, prompts could be specifically designed for use with a particular disorder or a set of disorders to collect more precise and thorough videos aimed at addressing a specific research question.

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Currently, the database includes videos on the following disorders:

• Angelman Syndrome
• Autism
• MPS Type 1
• MPS Type 2
• Familial Dysautonomia
• Sickle Cell Disease

We aim to rapidly expand the disorders covered in this database as we use innovative new tools to collect video from individuals with rare diseases and their families.