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New national registry aims to unlock mysteries of rare lung disease

NCT ID NCT02461615

Knowledge-focused Sponsor: Children's Hospital Medical Center, Cincinnati Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 26, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study creates a national registry for people with pulmonary alveolar proteinosis (PAP), a rare lung condition. Researchers will collect data and blood samples to improve diagnosis, understand how the disease progresses, and develop better ways to measure its severity. Up to 500 participants will help shape future research and potential treatments.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 500 people

The number the study aims to enrol. It can still change while the study runs.

Start date

Apr 2015

Expected to finish

Dec 2030

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients with Pulmonary Alveolar Proteinosis (Part A) Patient with Autoimmune Pulmonary Alveolar Proteinosis (Part B)

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria for Part A and Part B: * Written informed consent and assent, if applicable Inclusion Criteria for Part A (Cross Sectional Study of PAP Syndrome) * History of chest computed tomogram or chest radiograph findings compatible with PAP * History of diagnosis of PAP made by at least one of the following methods: * Positive (Abnormal) serum GMAb test -OR- * Lung biopsy clearly documenting the presence of PAP of any type or degree -OR- * Bronchoalveolar lavage cytology compatible with PAP -OR- * Recessive or compound mutations in genes known to cause PAP, i.e. GM-CSF receptor α or β chain, GM-CSF, surfactant protein B or C or ABCA3, ABCG1, ABCA1, TTF1 Inclusion Criteria For Part B (Longitudinal \& PRO Survey Study of autoimmune PAP Patients) * Diagnosis of autoimmune PAP as indicated by: * Positive (Abnormal) Serum GMAb Test -AND- * History of chest CT or x-rays findings compatible with PAP -OR- * Lung biopsy clearly documenting the presence of PAP of any type or degree -OR- * Bronchoalveolar lavage cytology compatible with PAP Exclusion Criteria or Part A and Part B: * Individuals who have a serious medical illness that, in the opinion of the investigator, is likely to interfere with completion of the study will be excluded. For Part A (Cross-sectional Study of PAP Syndrome) * Individuals that do not have a diagnosis of PAP For Part B (Longitudinal \& PRO Survey Study of autoimmune PAP Patients) * Individuals that do not have a diagnosis of autoimmune PAP

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Conditions

The condition(s) this trial relates to.

autoimmune pulmonary alveolar proteinosis pulmonary alveolar proteinosis

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Pulmonary alveolar proteinosis

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Cincinnati Children's Hospital Medical Center

    RECRUITING

    Cincinnati, Ohio, 45229, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.