Interstitial Lung Disease Research Unit Biobank
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Interstitial Lung Disease, Sarcoidosis, Idiopathic Pulmonary Fibrosis, Pulmonary Fibrosis. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Official title
University of Kansas Medical Center Interstitial Lung Disease Research Unit (ILDRU) Biobank
Overview
Establish a interstitial lung disease (ILD) registry and biorepository to lead towards a further understanding of the disease.
Detailed description
The University of Kansas ILD and Rare Lung Disease clinic sees hundreds of new patients per year. The investigators would like to leverage this resource to develop an Interstitial Lung Disease Research Unit (ILDRU) repository and database to help develop new methods for early diagnosis, uncover underlying genetic and environmental risk factors, as well as potential treatment targets in the broad range of interstitial lung diseases and rare lung diseases (RLD).
Primary outcome measures
- Collect clinically obtained data for patients with ILD, RLD and risk for ILD/RLD to support research. [Time frame: Enrollment to Year 10]
- Establish a collection of biological samples from patients with ILD, RLD and subjects at risk for ILD. [Time frame: Enrollment to Year 10]
- Correlate biological samples with individual longitudinal clinical data. [Time frame: Enrollment to Year 10]
- Provide biological samples to researchers performing studies in ILD and RLD. [Time frame: Enrollment to Year 10]
- Collect historical data and imaging from deceased patients with ILD. [Time frame: Enrollment to Year 10]
Eligibility criteria
Inclusion criteria
- The participant is a patient at TUKHS or has agreed to participate in a study approved by the KUMC Human Research Protection Program (HRPP)
- The participant is being followed for the presence of autoimmune disease, ILD or other rare lung diseases at TUKHS.
- The participant is ≥ 18 years of age.
- The participant has signed an approved consent for this study (living patients only)
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
United States · 1 center
- The University of Kansas Medical Center — Kansas City
Identifiers
NCT: NCT05392881 · STUDY00144558