23andMe IPF Research Study

Idiopathic Pulmonary Fibrosis Clinical Trial

— IPF  

Official title:

23andMe Idiopathic Pulmonary Fibrosis Research Study

Clinical Trial Details — Status: Active, not recruiting

Administrative data

• NCT number: NCT05028894
• Other study ID #: 23andMe_IPF001
• Status: Active, not recruiting
• Start date: June 5, 2020
• Est. completion date: December 1, 2023

Study information

• Verified date: November 2022
• Source: 23andMe, Inc.
• Contact: n/a
• Is FDA regulated: No
• Study type: Observational [Patient Registry]

Clinical Trial 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.

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.

Recruitment information / eligibility

• Status: Active, not recruiting
• Enrollment: 690
• Est. completion date: December 1, 2023
• Est. primary completion date: November 1, 2023
• Accepts healthy volunteers: No
• Gender: All
• Age group: 18 Years and older

Eligibility

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

Related Conditions & MeSH terms

• Fibrosis
• Idiopathic Pulmonary Fibrosis
• Pulmonary Fibrosis

Intervention

Other:
• No intervention
No intervention

Locations

Country	Name	City	State
United States	23andMe	Sunnyvale	California

Sponsors (1)

Lead Sponsor	Collaborator
23andMe, Inc.

Country where clinical trial is conducted

United States, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	IPF Symptom Progression Baseline	Survey asking about disease diagnosis, testing, treatments, and symptom progression	Baseline
Primary	IPF Symptom Progression 3 month follow-up	IPF Symptom Progression 3 month follow-up	3 months post baseline
Primary	IPF Symptom Progression 6 month follow-up	Survey asking about disease diagnosis, testing, treatments, and symptom progression	6 months post baseline
Primary	IPF Symptom Progression 9 month follow-up	Survey asking about disease diagnosis, testing, treatments, and symptom progression	9 months post baseline