CZI Rare As One

Goal/Objective:

The CZI Rare as One project is a Chan Zuckerberg Initiative (CZI) funded study that aims to co-design symptom tracking and transmitting smartphone apps for 5 different rare or poorly understood diseases including: Long COVID, pancreatitis, Sarcoidosis, Primary Ciliary Dyskinesia and Valosin Containing Protein (VCP) disease. The long-term goal of this project is to leverage this co-designed personal digital health technology approach to empower patients to better understand and treat their rare disease.

Description of the study

This project involves an extensive co-design process to design and build 5 unique apps to be used in conjunction with wearable devices to track and return back to the end-user passive and active measures of health and personalized triggers of each unique disease. The expected outcome of this project is to produce an open-source app co-design manual, and to place the co-designed apps into the public domain so that they can be leveraged and extended for other rare disease research and for the development of new outcome measures for randomized controlled trials.

Size and Timing

This project launched in January 2024 and includes a 5-month co-design phase, followed by an app build phase, and a 5-month pilot study beta testing phase. The project is due to be completed in June 2025.

Coalition and Collaboration partners

This project is a collaboration between CZI, 4YouandMe, AgileOps, the Patient Led Research Collaborative, Mission Cure, Foundation for Sarcoidosis Research, Primary Ciliary Dyskinesia (PCD) Foundation, and Cure VCP Disease