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Completed

NCT Number: NCT05028894

23andMe IPF Research Study

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.

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Key information

Conditions

Idiopathic Pulmonary Fibrosis Albinism Albinism, Oculocutaneous Amino Acid Metabolism, Inborn Errors Blood Coagulation Disorders Blood Coagulation Disorders, Inherited Blood Platelet Disorders Congenital, Hereditary, and Neonatal Diseases and Abnormalities Disease Attributes Eye Diseases Eye Diseases, Hereditary Fibrosis Genetic Diseases, Inborn Hematologic Diseases Hemic and Lymphatic Diseases Hemorrhagic Disorders Hermanski-Pudlak Syndrome Hypopigmentation Lung Diseases Lung Diseases, Interstitial Metabolic Diseases Metabolism, Inborn Errors Nutritional and Metabolic Diseases Pathologic Processes Pathological Conditions, Signs and Symptoms Pigmentation Disorders Platelet Storage Pool Deficiency Pulmonary Fibrosis Rare Diseases Respiratory Tract Diseases Skin Diseases Skin Diseases, Genetic Skin and Connective Tissue Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

23andMe

Sunnyvale, California, 94086, United States

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

No intervention

Other

No intervention

Primary outcomes

  1. IPF Symptom Progression Baseline

    Time frame: Baseline

    Survey asking about disease diagnosis, testing, treatments, and symptom progression

  2. IPF Symptom Progression 3 month follow-up

    Time frame: 3 months post baseline

    IPF Symptom Progression 3 month follow-up

  3. IPF Symptom Progression 6 month follow-up

    Time frame: 6 months post baseline

    Survey asking about disease diagnosis, testing, treatments, and symptom progression

  4. IPF Symptom Progression 9 month follow-up

    Time frame: 9 months post baseline

    Survey asking about disease diagnosis, testing, treatments, and symptom progression

Sponsors and collaborators

Lead sponsor

23andMe, Inc.

Industry

Registry information

Official study title

23andMe Idiopathic Pulmonary Fibrosis Research Study

Acronym: IPF

Important dates

Study start
2020
Primary completion
2023
Study completion
2023
First posted
Aug 31, 2021
Registry last updated
Dec 9, 2024

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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