23andMe Idiopathic Pulmonary Fibrosis Research Study
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Idiopathic Pulmonary Fibrosis
- Sponsor
- 23andMe, Inc.
- Enrollment
- 690
- Locations
- 1
- Primary Endpoint
- IPF Symptom Progression 6 month follow-up
- Status
- Completed
- Last Updated
- last year
Overview
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.
Investigators
Eligibility Criteria
Inclusion Criteria
- •Have been diagnosed with IPF or Hermansky-Pudlak syndrome (HPS)
- •Are 18+ years old
- •Live in the US
Exclusion Criteria
- •Have been diagnosed with sarcoidosis or hypersensitivity pneumonitis
Outcomes
Primary Outcomes
IPF Symptom Progression 6 month follow-up
Time Frame: 6 months post baseline
Survey asking about disease diagnosis, testing, treatments, and symptom progression
IPF Symptom Progression 9 month follow-up
Time Frame: 9 months post baseline
Survey asking about disease diagnosis, testing, treatments, and symptom progression
IPF Symptom Progression 3 month follow-up
Time Frame: 3 months post baseline
IPF Symptom Progression 3 month follow-up
IPF Symptom Progression Baseline
Time Frame: Baseline
Survey asking about disease diagnosis, testing, treatments, and symptom progression