Interstitial Lung Disease Research Unit Biobank | NCT05392881

Studies
Interstitial Lung Disease Research Unit Biobank

NCT05392881

Sponsor

University of Kansas Medical Center

Status

Recruiting

Last Update Posted

Jul 10, 2026Actual

Enrollment

1,000Estimated

Phase

Not provided

Conditions

Interstitial Lung Disease
Sarcoidosis
Idiopathic Pulmonary Fibrosis
Pulmonary Fibrosis
Hypersensitivity Pneumonitis

Interventions

Not provided

Countries

United States

Protocol Section

Identification Module Status Module Sponsor/Collaborators Module Oversight Module Description Module Conditions Module Design Module Arms/Interventions Module Outcomes Module Eligibility Module Contacts/Locations Module References Module IPD Sharing Statement Module

Results Section

Participant Flow Module Baseline Characteristics Module Outcome Measures Module Adverse Events Module More Info Module

Annotation Section

Annotation Module

Document Section

Large Document Module

Derived Section

Miscellaneous Info Module Condition Browse Module Intervention Browse Module

Protocol Section

Identification Module

NCT ID

Results Section

No data available

No data is available for this block.

Annotation Section

No data available

No data is available for this block.

Document Section

No data available

No data is available for this block.

Derived Section

Miscellaneous Info Module

Version Holder

Status Module

Record Verification Date

Jul 2026

Overall Recruitment Status or Expanded Access Status

Recruiting

Last Known Status

Not provided

Delayed Posting

Not provided

Why Stopped

Not provided

Expanded Access Info

Start Date

Aug 9, 2021Actual

Primary Completion Date

Aug 1, 2031Estimated

Completion Date

Mar 1, 2032Estimated

First Submitted Date

May 22, 2022

First Submission Date that Met QC Criteria

May 22, 2022

First Posted Date

May 26, 2022Actual

Results Waived

Not provided

Results First Submitted Date

Not provided

Results First Submitted that Met QC Criteria

Not provided

Results First Posted Date

Not provided

Certification/Extension (aka Delayed Results) First Submitted Date

Not provided

Certification/Extension First Submitted that Passed QC Review

Not provided

Certification/Extension First Posted Date

Not provided

Last Update Submitted Date

Jul 8, 2026

Last Update Posted Date

Jul 10, 2026Actual

Sponsor/Collaborators Module

Responsible Party, by Official Title

Scott Matson, Assistant Professor of Medicine, University of Kansas Medical CenterPrincipal Investigator

Lead Sponsor

University of Kansas Medical CenterOTHER

Collaborators

Not provided

Oversight Module

Has Data Monitoring Committee (DMC)

Is FDA Regulated Drug

Is FDA Regulated Device

Is Unapproved Device

Not provided

Pediatric Postmarket Surveillance of a Device Product

Not provided

Product Exported from US

Not provided

FDAAA801 Violation

Not provided

Description Module

Brief Summary

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).

Design Module

Study Type

Observational

Number of References to an Expanded Access Study

Not provided

Expanded Access Types

Not provided

Patient Registry

Yes

Target Follow-Up Duration

10 Years

Phases

Not provided

Interventional Study Design

Allocation

Not provided

Intervention Model

Biospecimen

No data available

No data is available for this block.

Enrollment

1,000Estimated

Outcomes Module

Primary Outcomes

Measure	Description	Time Frame
Collect clinically obtained data for patients with ILD, RLD and risk for ILD/RLD to support research.		Enrollment to Year 10
Establish a collection of biological samples from patients with ILD, RLD and subjects at risk for ILD.		Enrollment to Year 10
Correlate biological samples with individual longitudinal clinical data.		Enrollment to Year 10
Provide biological samples to researchers performing studies in ILD and RLD.		Enrollment to Year 10
Collect historical data and imaging from deceased patients with ILD.		Enrollment to Year 10

Secondary Outcomes

Not provided

Other Outcomes

Not provided

Eligibility Module

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)

Accepts Healthy Volunteers

Sex

All

Sex/Gender Based

Not provided

Sex/Gender Description

Not provided

Minimum Age

18 Years

Maximum Age

Not provided

Standard Ages

AdultOlder Adult

Study Population

Patients with ILD, RLD and subjects at risk for ILD

Sampling Method

Non-Probability Sample

Contacts/Locations Module

Central Contacts

Name	Role	Phone	Extension	Email
Kimberly Donnelly, Ph.D.	Contact	913-588-6067		kdonnelly@kumc.edu

Overall Officials

Name	Affiliation	Role
Scott Matson, M.D.	University of Kansas Medical Center	Principal Investigator

Locations

Facility	Status	City	State	ZIP	Country	Contacts
The University of Kansas Medical Center	Recruiting	Kansas City	Kansas	66160	United States

IPD Sharing Statement Module

Plan to Share IPD

Yes

Description

Contact Kimberly Lovell to discuss accessing IPD

Types

Not provided

Time Frame

Not provided

Access Criteria

Not provided

URL

Not provided

Condition Browse Module

MeSH Terms

ID	Term
D017563	Lung Diseases, Interstitial
D012507	Sarcoidosis
D054990	Idiopathic Pulmonary Fibrosis
D011658	Pulmonary Fibrosis
D000542	Alveolitis, Extrinsic Allergic

Ancestor Terms

ID	Term
D008171	Lung Diseases
D012140	Respiratory Tract Diseases
D008232	Lymphoproliferative Disorders
D008206	Lymphatic Diseases

Browse Leaves

Not provided

Browse Branches

Not provided