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

NCT06907953 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 239

Last updated 2025-08-12

No results posted yet for this study

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.

Conditions

  • Pancreatitis, Chronic
  • Sarcoidosis
  • VCP Disease
  • Long COVID
  • PCD
  • Symptoms and Signs
  • Wearables

Interventions

OTHER

Observational - no intervention

Pilot, observational study - no intervention

Sponsors & Collaborators

  • Patient Led Research Collaborative (PLRC)

    collaborator UNKNOWN

  • Mission: Cure

    collaborator OTHER

  • Cure VCP Disease

    collaborator UNKNOWN

  • Foundation for Sarcoidosis Research (FSR)

    collaborator UNKNOWN

  • Primary Ciliary Disease Foundation (PCD)

    collaborator UNKNOWN

  • 4YouandMe

    lead OTHER

Eligibility

Min Age
14 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2025-02-06
Primary Completion
2025-07-01
Completion
2025-07-01

Countries

  • United States

Study Locations

More Related Trials

Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT06907953 on ClinicalTrials.gov