23andMe IPF Research Study

NCT05028894 | Completed

• 1 other identifier: 23andMe_IPF001
• Study Type: observational
• Target: 690
• Locations: 1 country
• Sites: 1

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.

Conditions

Idiopathic Pulmonary Fibrosis

Keywords

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

Outcome Measures

Primary Outcomes (4)

• IPF Symptom Progression Baseline

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

  Baseline

• IPF Symptom Progression 3 month follow-up

  IPF Symptom Progression 3 month follow-up

  3 months post baseline

• IPF Symptom Progression 6 month follow-up

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

  6 months post baseline

• IPF Symptom Progression 9 month follow-up

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

  9 months post baseline

Study Arms (1)

IPF

Participants diagnosed with idiopathic pulmonary fibrosis

Other: No intervention

Interventions

No intervention OTHER

No intervention

IPF

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

The study population will only include participants who meet the eligibility criteria as described above. Participants in the study will be diagnosed with IPF or HPS.

You may qualify if:

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

You may not qualify if:

• \- Have been diagnosed with sarcoidosis or hypersensitivity pneumonitis

Sponsors & Collaborators

• 23andMe, Inc.: lead

Study Sites (1)

23andMe

Sunnyvale, California, 94086, United States

Location

Biospecimen

Retention: SAMPLES WITH DNA

Saliva sample

MeSH Terms

Conditions

Idiopathic Pulmonary Fibrosis; Pulmonary Fibrosis; Lung Diseases; Respiratory Tract Diseases; Rare Diseases; Hermanski-Pudlak Syndrome

Condition Hierarchy (Ancestors)

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

Study Officials

• Suyash Shringarpure

  23andMe, Inc.

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Target Duration: 9 Months
• Sponsor Type: INDUSTRY
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: August 26, 2021
• First Posted: August 31, 2021
• Study Start: June 5, 2020
• Primary Completion: May 5, 2023
• Study Completion: May 5, 2023
• Last Updated: December 9, 2024

Record last verified: 2024-12

Locations

US (1)