23andMe IPF Research Study

23andMe Idiopathic Pulmonary Fibrosis Research Study

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT05028894

Acronym

IPF

Enrollment

690

Registered

2021-08-31

Start date

2020-06-05

Completion date

2023-05-05

Last updated

2024-12-09

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Idiopathic Pulmonary Fibrosis

Keywords

idiopathic pulmonary fibrosis, IPF, pulmonary fibrosis, lung diseases, lung, respiratory tract diseases, rare, rare diseases, Hermansky-Pudlak syndrome, HPS

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.

Interventions

OTHERNo intervention

No intervention

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

18 Years to No maximum

Healthy volunteers

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

Design outcomes

Primary

Measure	Time frame	Description
IPF Symptom Progression Baseline	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 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

Countries

United States

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026