23andMe IPF Research Study

Completed

• Conditions: Idiopathic Pulmonary Fibrosis
• Interventions: Other: No intervention

• Registration Number: NCT05028894
• Lead Sponsor: 23andMe, Inc.

Brief Summary

The long term goal of this study is to increase genetic understanding of IPF to enable the development of an effective drug for IPF that can improve the lives of those living with the condition.

Detailed Description

This study will recruit 1,000 people who have been diagnosed with IPF or Hermansky-Pudlak syndrome (HPS). Eligible participants who consent to participate in 23andMe Research and the IPF Research Study will receive a 23andMe Health + Ancestry kit at no cost. Participants will provide a saliva sample and take a baseline survey online answering questions about their disease diagnosis, testing, treatment, and symptoms. Participants will also be asked to take the same survey 3, 6, and 9 months after completing the baseline survey. The data collected from this study will be incorporated into the 23andMe Database and used to better understand the underlying genetic and environmental factors that contribute to IPF.

Study Timeline

• Study Start: 2020-06-05
• Study First Submitted: 2021-08-26
• Study First Submitted QC: 2021-08-26
• Study First Posted: 2021-08-31
• Primary Completion: 2023-05-05
• Study Completion: 2023-05-05
• Status Verified: 2024-12
• Last Update Submitted: 2024-12-05
• Last Update Posted: 2024-12-09

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 690

Inclusion Criteria

• Have been diagnosed with IPF or Hermansky-Pudlak syndrome (HPS)
• Are 18+ years old
• Live in the US

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Exclusion Criteria

• Have been diagnosed with sarcoidosis or hypersensitivity pneumonitis

Read More

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
IPF	No intervention	Participants diagnosed with idiopathic pulmonary fibrosis

Primary Outcome Measures

Name	Time	Method
IPF Symptom Progression 6 month follow-up	6 months post baseline	Survey asking about disease diagnosis, testing, treatments, and symptom progression
IPF Symptom Progression 9 month follow-up	9 months post baseline	Survey asking about disease diagnosis, testing, treatments, and symptom progression
IPF Symptom Progression 3 month follow-up	3 months post baseline	IPF Symptom Progression 3 month follow-up
IPF Symptom Progression Baseline	Baseline	Survey asking about disease diagnosis, testing, treatments, and symptom progression

Trial Locations

Locations (1)

23andMe; 🇺🇸 Sunnyvale, California, United States