Rare Disease Research Project Support
The Problem: Carers too consumed by the work to also act as researchers.
Rare degenerative diseases create a brutal information problem. The years-long progression matters scientifically, but carers are too consumed by the work of looking after a loved one to also act as researchers. Cherished memories slip away alongside critical clinical detail. Without a system that captures the full arc of the disease - video, photos, audio (the disease in question also leads to blindness, making audio especially important) - both the family memory and the medical insight are lost.
The Approach: DAM with simple tagging, triple-redundant backups, cyber security as foundation.
Terabytes of video, photos and audio resulted from a single carer's documentation. The system uses simple, easy-to-use tagging and retrieval so carers can find what they need without becoming a database administrator on top of everything else. Because the data is irreplaceable, we built three redundant systems with minimal carer intervention required to maintain backup integrity. Built with cyber security as a foundational requirement, not an afterthought.
The Outcome: Family memory and clinical detail captured across the years-long disease arc.
The carer has a working system for both family memory and clinical documentation, designed to require minimum effort from someone already running on empty. The asset library captures the years-long progression of a rare disease in a form that's both personally meaningful and scientifically useful. The redundant backup architecture means the data survives whatever happens to any single system.
We were allowed a small insight into this world when we began piecing together an asset library for a carers. Not only to secure cherished memories of a family member, but to track the years long process of the disease, allowing for new insights.
For diseases that are very rare and degenerative, gaining real insight into the progress of the illness is difficult. Carers are simply busy with the act of trying to look after their loved ones over the course of years, sometimes decades. We set up a Digital Asset Management System to manage TB's of video, photos and audio (the disease also leads to blindness), and set up a simple, easy to use tagging and retrieval system.
The data is critical, so we also set up 3 redundant systems with minimal carer intervention. Some of these videos will be provided to researchers over time, and others used for training purposes as outside carers become involved. Various Systems and Process changes need to be designed and implemented over time as new requirements need to be managed.