Conditions

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

Eligibility

Eligible Ages

Over 14 Years

Eligible Genders

All

Accepts Healthy Volunteers

No

Criteria

GENERAL INCLUSION CRITERIA

- 18+ years (except 14+ years for the PCD sub-arm)

- own a personal mobile device and use this phone to download and use the app for the
study

- resides in the US

- be willing to use the study wearable devices

- have a clinician confirmed or suspected diagnosis of one of the 5 rare conditions as
defined below in the cohort specific inclusion criteria below:

Long COVID sub-arm:

- have experienced Long COVID for at least 3 months as a continuous, relapsing and
remitting, or progressive condition; and

- have experienced within the past week at least one or more of the following symptoms
that started or significantly worsened following a COVID infection: shortness of
breath, cough, persistent fatigue, post-exertional malaise (worsening of symptoms or
fatigue after minimal activity), difficulty concentrating, memory changes, recurring
headache, lightheadedness, fast heart rate, sleep disturbance, problems with taste
or smell, bloating, constipation, and diarrhea.

- symptom(s) of COVID significantly impact your ability to work, ability to give care,
enjoy recreational activities or reduce your quality of life

- Own a personal iPhone 8 (iOS 16+) or Android smartphone (version 12 or newer)

Sarcoidosis sub-arm

- have a diagnosis of sarcoidosis confirmed by a doctor, and have experienced fatigue
for at least 2 days in the past month

- Own a personal iPhone 6s (iOS 15+) or Android smartphone (version 12 or newer)

Pancreatitis sub-arm

- have a diagnosis of chronic pancreatitis confirmed by a doctor, have had at least 1
pancreatitis flare in the past year, and have not had a surgery that completely
removed the pancreas

- Own a personal iPhone 6s (iOS 15+) or Android smartphone (version 12 or newer)

VCP disease sub-arm

- have a clinician confirmed pathogenic VCP mutation or a family history of VCP
disease, and are experiencing symptoms associated with the disease

- Own a personal iPhone 8 (iOS 16+) or Android smartphone (version 12 or newer)

PCD sub-arm

- a genetic test that confirms two abnormal copies (one on each gene) of a gene
associated with PCD. These abnormalities must be classified as "pathogenic" or
"likely pathogenic."; Or an abnormal electron microscopy cilia biopsy done in a PCD
center.; and symptoms consistent with PCD.

- Own a personal iPhone 8 (iOS 16+) or Android smartphone (version 12 or newer)

Study Contact

Detailed Description

The CZI Rare As One Study is a pilot, beta testing that aims to recruit ~50 participants per disease group (LongCOVID, pancreatitis, sarcoidosis, VCP disease, and PCD) totalling 250 participants. Participants will be instructed to us a co-designed study app alongside specific wearable and smart devices as outlined below for 5 months. LongCOVID: Oura ring, Empatica EmbracePlus wristband, Lumia ear device Pancreatitis: Oura ring, Empatica EmbracePlus wristband Sarcoidosis: Oura ring VCP Disease: Oura ring, MIR Smart One Spirometer, Apple Watch series 8 PCD: Oura ring, MIR Smart One Spirometer Research staff (engagement specialists) will check-in via phone every 2 weeks with participants to provide support, troubleshoot tech problems, solicit study-related feedback and collect context related information about the participants disease. The study app collects symptom specific information for each disease group, measures of disease burden, quality of life, and information about participants routines through self-reported surveys and tasks (cognitive, active tasks) and passive phone metadata derived from SensorKit's Research framework and an Android equivalent framework.