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Pulmonary Fibrosis Foundation Community Registry

Study Purpose

Pulmonary fibrosis (PF) results from a diverse group of health conditions and affects the lives of patients (including those who are post lung transplant), caregivers and family members. The Pulmonary Fibrosis Foundation Community Registry will offer an online portal where participants can self-enroll and directly contribute information about their experience with PF to be compiled into a longitudinal data set for use by researchers.

Recruitment Criteria

Accepts Healthy Volunteers Healthy volunteers are participants who do not have a disease or condition, or related conditions or symptoms	Yes
Study Type An interventional clinical study is where participants are assigned to receive one or more interventions (or no intervention) so that researchers can evaluate the effects of the interventions on biomedical or health-related outcomes. An observational clinical study is where participants identified as belonging to study groups are assessed for biomedical or health outcomes. Searching Both is inclusive of interventional and observational studies.	Observational [Patient Registry]
Eligible Ages	18 Years and Over
Gender	All

More Inclusion & Exclusion Criteria

Inclusion Criteria:

In order to be eligible to participate in this study, an individual must meet all of the following criteria: 1. Provision of signed and dated informed consent form online. 2. Male or female, aged 18 or older. 3. Affected by PF as a member of at least one of the following cohorts: 1. An individual diagnosed with PF or ILD, including those who are post lung transplant, or. 2. An individual who has cared (currently or in the past) for an individual with PF or ILD, and / or. 3. A family member (defined as parent, full or half-sibling, or child) of an individual with PF or ILD. 4. Has internet access and a valid email address.

Exclusion Criteria:

An individual who meets any of the following criteria will be excluded from participation in this study: 1. Primary residence or place of care is outside of the US. 2. Inability or unwillingness of a participant to provide informed consent or comply with study protocol. 3. Any condition or circumstance not listed above, which, in the opinion of the investigator, may pose additional risks from participation in the study, may interfere with the participant's ability to comply with study requirements or that may impact the quality or interpretation of the data obtained from the study. 4. Patients who were diagnosed with any of the below lung diseases. Similarly caregivers and family members associated with these diseases would be excluded.

- Sarcoid.

- Lymphangioleiomyomatosis (LAM) - Pulmonary alveolar proteinosis (PAP) - Cystic fibrosis (CF) - Amyloidosis

Trial Details

Trial ID: This trial id was obtained from ClinicalTrials.gov, a service of the U.S. National Institutes of Health, providing information on publicly and privately supported clinical studies of human participants with locations in all 50 States and in 196 countries.	NCT05382572
Phase Phase 1: Studies that emphasize safety and how the drug is metabolized and excreted in humans. Phase 2: Studies that gather preliminary data on effectiveness (whether the drug works in people who have a certain disease or condition) and additional safety data. Phase 3: Studies that gather more information about safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs. Phase 4: Studies occurring after FDA has approved a drug for marketing, efficacy, or optimal use.
Lead Sponsor The sponsor is the organization or person who oversees the clinical study and is responsible for analyzing the study data.	Pulmonary Fibrosis Foundation
Principal Investigator The person who is responsible for the scientific and technical direction of the entire clinical study.	Kevin R Flaherty, MD
Principal Investigator Affiliation	Pulmonary Fibrosis Foundation
Agency Class Category of organization(s) involved as sponsor (and collaborator) supporting the trial.	Other
Overall Status	Recruiting
Countries	United States
Conditions The disease, disorder, syndrome, illness, or injury that is being studied.	Pulmonary Fibrosis, Interstitial Lung Disease, Lung Fibrosis, Idiopathic Pulmonary Fibrosis
Study Website:	View Trial Website

Additional Details

The PFF Community Registry is an observational, longitudinal cohort study. The Community Registry will enroll three different cohort groups: 1. Patients with PF, including those who are post lung transplant. 2. Caregivers of patients with PF. 3. Family members of patients with PF. This is an online registry open to individuals affected by PF in the US. It is not associated with a physical location or institution. Individuals may self-enroll online and contribute data to the Community Registry by answering a series of surveys at regular intervals. Participants may also elect to be contacted about future research projects through the PFF Community Registry portal. However, this is not required to participate in the Community Registry itself.

Arms & Interventions

Arms

: Patients

An individual diagnosed with PF or ILD, including those who are post lung transplant.

: Family Members

A family member (defined as biological parent, full or half-sibling, or biological child) of an individual with PF or ILD.

: Caregivers

An individual who has cared (currently or in the past) for an individual with PF or ILD.

Interventions

Contact a Trial Team

If you are interested in learning more about this trial, find the trial site nearest to your location and contact the site coordinator via email or phone. We also strongly recommend that you consult with your healthcare provider about the trials that may interest you and refer to our terms of service below.

Pulmonary Fibrosis Foundation, Chicago, Illinois

Status

Recruiting

Address

Pulmonary Fibrosis Foundation

Chicago, Illinois, 60611

Site Contact

Kevin Flaherty, MD

registry@pulmonaryfibrosis.org

844-825-5733