Using Technology to Increase Access to Rare Disease Research
#bpanwarriors #datacollection #naturalhistory #patientdata #nhs #ciitizen #srf #rarediseases #patientadvocacy
Elise Brimble is one of the few people who could successfully fill the role of guiding the creation of a platform for a digital Natural History Study. She draws on her career as a genetic counselor to help build a tool that is an essential prerequisite for clinical trials of any treatments, including those currently under development. Ciitizen is a company leveraging HIPPA law and medical records to create a digital Natural History Study, complete with normalized data analysis, and machine learning.
After introducing the company, Ms. Brimble gives an overview of the pipeline of information used by the platform, shows the scope of the joint project between Ciitzen and fellow rare disease community SRF, and leaves us with a snapshot of a similar sample data extraction that our BPAN community can expect upon completion of our BPAN data collection.