Interstitial Lung DiseaseILDRUNCT05392881
Interstitial Lung Disease Research Unit Biobank
An observational study of Interstitial Lung Disease and Sarcoidosis, run by University of Kansas Medical Center at 1 site in United States.
Trial summary
Establish a interstitial lung disease (ILD) registry and biorepository to lead towards a further understanding of the disease. Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Interstitial Lung Disease, Sarcoidosis, Idiopathic Pulmonary Fibrosis
- How many people
- 1,000 participants
- Where
- 1 siteUnited States
- Study dates
- 9 Aug 2021to 1 Mar 2032
- How long will I take part?
- 10 Years
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: Patients with ILD, RLD and subjects at risk for ILD
Who may be able to join
- 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)
Who cannot join
None listed.
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
United States1 site, 1 recruiting
- Recruiting
The University of Kansas Medical Center
Kansas City, Kansas, 66160
Kimberly Donnelly, Ph.D., 913-588-6067, kdonnelly@kumc.edu
Chase Hall, M.D.
About this study
Official title: University of Kansas Medical Center Interstitial Lung Disease Research Unit (ILDRU) Biobank
Establish a interstitial lung disease (ILD) registry and biorepository to lead towards a further understanding of the disease.
Read the 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).
- Conditions
- Interstitial Lung Disease, Sarcoidosis, Idiopathic Pulmonary Fibrosis, Pulmonary Fibrosis, Hypersensitivity Pneumonitis
- Keywords
- Interstitial Lung Disease, Sarcoidosis, Idiopathic Pulmonary Fibrosis, Pulmonary Fibrosis, Hypersensitivity Pneumonitis
- Medical subject headings
- Lung Diseases, Interstitial, Sarcoidosis, Idiopathic Pulmonary Fibrosis, Pulmonary Fibrosis, Alveolitis, Extrinsic Allergic
What is being measured
The primary outcome is the main question the study is designed to answer.
Collect clinically obtained data for patients with ILD, RLD and risk for ILD/RLD to support research.
Measured: Enrollment to Year 10
Establish a collection of biological samples from patients with ILD, RLD and subjects at risk for ILD.
Measured: Enrollment to Year 10
Correlate biological samples with individual longitudinal clinical data.
Measured: Enrollment to Year 10
Provide biological samples to researchers performing studies in ILD and RLD.
Measured: Enrollment to Year 10
Collect historical data and imaging from deceased patients with ILD.
Measured: Enrollment to Year 10
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted26 May 2022
- Study start9 Aug 2021
- Primary completion1 Aug 2031 (estimated)
- Study completion1 Mar 2032 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Interstitial Lung DiseaseStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 1,000 participants (estimated)
- Target duration
- 10 Years
Sponsor and investigators
- Lead sponsor
- University of Kansas Medical Center
- Sponsor type
- University, hospital or other
- Responsible party
- Principal investigator, Scott Matson, University of Kansas Medical Center
- Investigators
- Scott Matson, M.D., Principal investigator, University of Kansas Medical Center
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05392881
- Sponsor's protocol ID
- STUDY00144558
- Acronym
- ILDRU
- Status last verified
- Jul 2026
- First submitted
- 22 May 2022
- Last updated
- 10 Jul 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Yes: Contact Kimberly Lovell to discuss accessing IPD
Study at a glance
From the registry record, last updated by the sponsor on 10 Jul 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- University of Kansas Medical Center Interstitial Lung Disease Research Unit (ILDRU) Biobank
- ClinicalTrials.gov ID
- NCT05392881
- Acronym / sponsor ID
- ILDRU / STUDY00144558
- Conditions
- Interstitial Lung Disease, Sarcoidosis, Idiopathic Pulmonary Fibrosis, Pulmonary Fibrosis, Hypersensitivity Pneumonitis
- Keywords
- Interstitial Lung Disease, Sarcoidosis, Idiopathic Pulmonary Fibrosis, Pulmonary Fibrosis, Hypersensitivity Pneumonitis
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 1,000 participants (estimated)
- Lead sponsor
- University of Kansas Medical CenterUniversity, hospital or other
- Study start
- 9 Aug 2021 (actual)
- Primary completion
- 1 Aug 2031 (estimated)
- Study completion
- 1 Mar 2032 (estimated)
- First posted
- 26 May 2022 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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).
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Target follow-up
- 10 Years
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- Patients with ILD, RLD and subjects at risk for ILD
Key inclusion criteria (4 listed)
- 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)
Key exclusion criteria (0 listed)
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
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
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 10 Jul 2026.
- Individual participant dataSharing planned: Yes. Contact Kimberly Lovell to discuss accessing IPD
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Scott Matson, M.D. principal investigator
University of Kansas Medical Center
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Interstitial Lung Disease and Sarcoidosis, run by University of Kansas Medical Center at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 0 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 10 Jul 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Kimberly Donnelly, Ph.D. (913-588-6067, kdonnelly@kumc.edu), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Collect clinically obtained data for patients with ILD, RLD and risk for ILD/RLD to support research. (time frame: Enrollment to Year 10). The study lists 5 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 10 Jul 2026.