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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.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| IPF | Participants diagnosed with idiopathic pulmonary fibrosis |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| No intervention | Other | No intervention |
|
| Measure | Description | Time Frame |
|---|---|---|
| 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 |
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Inclusion Criteria:
Exclusion Criteria:
- Have been diagnosed with sarcoidosis or hypersensitivity pneumonitis
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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.
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| Name | Affiliation | Role |
|---|---|---|
| Suyash Shringarpure | 23andMe, Inc. | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| 23andMe | Sunnyvale | California | 94086 | United States |
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| ID | Term |
|---|---|
| D054990 | Idiopathic Pulmonary Fibrosis |
| D011658 | Pulmonary Fibrosis |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
| D035583 | Rare Diseases |
| D022861 | Hermanski-Pudlak Syndrome |
| ID | Term |
|---|---|
| D017563 | Lung Diseases, Interstitial |
| D005355 | Fibrosis |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
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Saliva sample
| D020969 | Disease Attributes |
| D016115 | Albinism, Oculocutaneous |
| D000417 | Albinism |
| D015785 | Eye Diseases, Hereditary |
| D005128 | Eye Diseases |
| D025861 | Blood Coagulation Disorders, Inherited |
| D001778 | Blood Coagulation Disorders |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
| D010981 | Platelet Storage Pool Deficiency |
| D001791 | Blood Platelet Disorders |
| D006474 | Hemorrhagic Disorders |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D000592 | Amino Acid Metabolism, Inborn Errors |
| D008661 | Metabolism, Inborn Errors |
| D012873 | Skin Diseases, Genetic |
| D017496 | Hypopigmentation |
| D010859 | Pigmentation Disorders |
| D012871 | Skin Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |