The ultimate goal of the Clinical Picture Maker is to create an ever-growing library - The See System Rare Disease Video Database - of videos documenting the 10,000+ identified rare disorders. This database could become a valuable resource for both education and research for clinicians, medical students, families, caregivers, therapists, pharmaceutical developers and other stakeholders. The See System Rare Disease Video Database provides a number of different ways to explore and investigate the videos.
Search
The Search tool allows users to conduct targeted searches of the See System Rare Disease Video Database. Users can search and filter results based on:
- Diagnosis - Search only videos showing participants with a given diagnosis or set of diagnoses
- Symptoms - Search only videos containing examples of a specific symptom or set of symptoms
- Topics - Search only videos related to certain topics
- Participant Age - Search only videos showing participants within a certain age range
Case Histories
In addition to searches, users can also view Case Histories of participants in the See System Rare Disease Video Database. Each participant with at least one video in the database has a Case History page, which can be accessed by clicking on the participant’s icon on a video page, or by looking at the list of Case Histories for each disorder. Each Case History page presents the participant’s videos as a timeline, making it a powerful way to see changes over time.
In this way, the See System Rare Disease Video Database is also a repository of “video natural histories” - collections of videos which show how a disorder changes over time, whether due to the natural course of a disease, or caused by an intervention.
Ben's Timeline
Age 1 and 7 Months
Ben learning to walk.
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Age 1 and 9 Months
Ben suffering from infantile spasms.
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Age 1 and 11 Months
Physical therapist encourages Ben to walk.
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Age 2 and 5 Months
Ben stands up with encouragement from therapist.
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Age 3
Ben eats from spoon with encouragement from mom
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Age 4
Ben plays catch at occupational therapy
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Age 4
Ben eats breakfast with encouragement.
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Age 4
Ben has a night seizure.
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Age 5
Ben learning the word "up" and climbing a ladder.
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Age 7
Ben learns how to use a communication device.
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Age 8
Ben walks around supermarket.
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Age 8
Ben plays with a toy car.
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Age 9
Ben slowly walks up two stairs.
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Age 10
Ben flaps his hands while having a snack.
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Age 10
Ben is distressed.
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Age 11
Ben experiences a shaking episode.
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Age 11
Ben splashes in pool.
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Age 12
Ben uses cane at school.
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Age 12
Ben self-feeding french fries.
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Age 12
Ben woken up by shaking episode.
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Age 13
Ben shaking episode with quivering jaw.
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Age 13
Ben walks around hotel lobby with a cane.
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Age 14
Ben colors with Mimi and Dad.
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Age 14
Ben finds his favorite toy in the toy box.
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Age 14
Ben eats dinner.
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Collections
Users can also create their own “Collections” of videos as they search and explore the database. Users can add videos to their collections so they can come back and view them later without having to search for it. Users will also be able to share their collections with other database users.
Educational Documentaries
In addition to the variety of ways that the raw clips can be searched and explored in the See System Rare Disease Database, the videos can also be utilized to create educational documentaries, courses, and other tools to promote learning.
Here are several example clips from a course on SCN2A-related disorders created using videos uploaded by parents via the DAYTool, and interviews with the experts who reviewed the videos:
Dr. Devinsky Analyzes Volodymyr’s Atypical Seizures
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Infantile Spasms
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Dr. Coffman on Paroxysmal Non-Epileptic Events
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Rebecca Hommer Explains Latency, an Element of Cortical Visual Impairment
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