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First received: January 31, 2025

Clinical Trial: CZI Rare As One: Co-designing an App and Wearable Based Compass for Rare Diseases

Study Status: COMPLETED

Recruit Status: COMPLETED

Condition: Pancreatitis, Chronic

Study Type: OBSERVATIONAL


Official Title: CZI Rare As One: Co-designing an App and Wearable Based Compass for Rare Diseases

Brief Summary: The CZI Rare As One study is a Chan Zuckerberg Initiative funded study that aims to co-design and pilot test unique symptom tracking and transmitting apps across 5 different sub-arms that includes individuals with Long COVID, Pancreatitis, Sarcoidosis, Vasolin-Containing Protein (VCP) disease and Primary Ciliary disease (PCD).This study aims to use multimodal digital health tools to enable patients to self-monitor their symptoms in passive and active ways.

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