Clinical Picture Maker: Collecting Video

The aim of the Clinical Picture Maker is to accelerate the collection, organization, and dissemination of videos documenting rare diseases. In the past, collecting videos typically meant sending a camera crew on location to record individuals in their homes, schools, and other environments where they spend their time. This process is time and resource intensive. That’s why we developed the DAYTool - a novel approach that helps individuals with rare diseases and their families record and upload videos documenting their symptoms, challenges, and life with a rare disorder. 

The DAYTool

Once the DAYTool user provides basic information about the participant - either themself or their child or individual under their care - they are given a set of prompts that ask them about different aspects of life with a rare disorder. Each prompt has example videos to provide inspiration and ideas for what to record. The DAYTool also provides guidance about how to record high quality videos.

Using their smartphone or other device, users record videos and then upload them directly to the Clinical Picture Maker platform. For each video they upload, users provide basic information including a title for the video, a short description of the video, and the date the video was filmed. Users also have the option providing a list of symptoms or keywords that relate to the video.

Here are a few examples of videos submitted via the DAYTool:

Share Page

DAYTool users also have the ability to share their videos directly with their clinician, therapist, and anyone else they choose to. By default, the Share page will show all the videos that user has uploaded, but the DAYTool user can also opt to select specific videos to show on the page.  The Share page will only be visible to individuals specifically invited by the DAYTool user. 

Uses for Research

The DAYTool can be customized to provide unique sets of prompts to different users. This makes it an ideal platform for researchers seeking to collect video from individuals on specific topics. The prompts can be designed to ask questions about a specific topic, or request videos of a specific activity or symptom.

When the DAYTool is used for research, the researchers will have the ability to sequester the videos, meaning they won’t be added to the larger See System Rare Disease Video database, but instead will only be viewable by the research team collecting the videos. This can be useful for investigators working with participants who want to participate in a research study or clinical trial, but don’t want their videos to be viewed by a wider audience for other purposes. Additionally, the investigators can also choose to allow the participants to decide for themselves whether or not they want their videos to be added to the See System Rare Disease Database or sequestered for use only in the study they are participating in. 

Traditional Video Production

While the DAYTool provides a crucial way to accelerate the collection of videos documenting rare disorders, there is still a place for traditional documentary video production techniques. The Clinical Picture Maker can accommodate both DAYTool videos and videos produced using a camera crew, which can be added by Clinical Picture Maker staff. This also allows for the inclusion of edited documentaries which can be valuable for more in-depth educational courses, such as those produced by GeneticaLens on Angelman syndrome, Autism spectrum disorder, MPS-Types I and II, sickle cell disease, and familial dysautonomia.