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Scientists launch massive effort to understand rare lung diseases

NCT ID NCT03041623

Knowledge-focused Sponsor: North East Japan Study Group Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 27, 2026 · Last updated Jun 27, 2026

Summary

This registry is following 867 people with idiopathic interstitial pneumonias (IIPs), a group of rare lung diseases. The goal is to learn how these diseases behave over time, how they are diagnosed, and what treatments doctors currently use. No new drugs or procedures are being tested—this study simply observes and records information to improve future care.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this registry could provide a clearer picture of how these rare lung diseases progress, helping doctors diagnose and manage them better in the future.
What could go wrong
This is an observational registry, not a treatment trial. It collects data but does not test any new therapy, so it won't directly lead to a cure or new drug.

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

867 people

The number who actually took part.

Started

Dec 2016

Expected to finish

Mar 2027

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

Newly diagnosed IIPs within 6 months before registration

Ages

20 to 84 years

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: 1. Patients aged between 20 and 84 years 2. Patients with idiopathic pulmonary fibrosis (IPF) and other IIPs diagnosis within 6 months before registration at each facility 3. Patients from whom written informed consent has been obtained regarding participation in this study and follow-up observation Exclusion Criteria: 1. Patients for whom the tests (such as the lung function test) conducted in this study could not be performed 2. Patients who underwent pulmonary resection 3. Patients undergoing dialysis 4. Patients with cancer treated at the time of registration or those planning to receive treatment in the future

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Conditions

The condition(s) this trial relates to.

idiopathic interstitial pneumonia idiopathic pulmonary fibrosis

As listed by the trial registrant

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

Idiopathic interstitial pneumonia

Contacts and locations

Locations

  • Asahikawa Medical University Hospital

    Asahikawa, Hokkaido, 078-8510, Japan

  • Aso Iizuka Hospital

    Iizuka, Fukuoka, 820-8505, Japan

  • Chiba University Hospital

    Chiba, Chiba, 260-8677, Japan

  • Dokkyo Medical University Hospital

    Tochigi, Tochigi, 321-0293, Japan

  • Dokkyo Medical University Koshigaya Hospital

    Koshigaya, Saitama, 343-8555, Japan

  • Ehime Prefectural Central Hospital

    Matsuyama, Ehime, 790-0024, Japan

  • Fujita Health University Hospital

    Toyoake, Aichi-ken, 470-1192, Japan

  • Fukuoka University Chikushi Hospital

    Chikushino-shi, Fukuoka, 818-8502, Japan

  • Fukuoka University Hospital

    Fukuoka, Fukuoka, 814-0180, Japan

  • Fukushima Medical University Hospital

    Fukushima, Fukushima, 960-1295, Japan

  • Gunma University Hospital

    Maebashi, Gunma, 371-8511, Japan

  • Hamamatsu Rosai Hospital

    Hamamatsu, Shizuoka, 430-8525, Japan

  • Hamamatsu University Hospital

    Hamamatsu, Shizuoka, 431-3126, Japan

  • Haruhi Respiratory Medical Hospital

    Kiyosu, Aichi-ken, 452-0962, Japan

  • Hirosaki University Hospital

    Hirosaki, Aomori, 036-8562, Japan

  • Hiroshima Prefectural Hospital

    Hiroshima, Hiroshima, 734-8530, Japan

  • Hiroshima University Hospital

    Hiroshima, Hiroshima, 734-8551, Japan

  • Ibarakihigashi National Hospital

    Naka, Ibaraki, 319-1113, Japan

  • Iwate Prefectural Central Hospital

    Morioka, Iwate, 020-0066, Japan

  • JR Tokyo General Hospital

    Tokyo, Tokyo, 151-8528, Japan

  • Japanese Red Cross Ise Hospital

    Ise, Mie-ken, 516-8512, Japan

  • Japanese Red Cross Medical Center

    Tokyo, Tokyo, 150-8935, Japan

  • Japanese Red Cross Saitama Hospital

    Saitama, Saitama, 330-8553, Japan

  • Jichi Medical University

    Shimotsuke, Tochigi, 329-0498, Japan

  • Juntendo University Hospital

    Tokyo, Tokyo, 113-8431, Japan

  • Kagoshima University Hospital

    Kagoshima, Kagoshima-ken, 890-8520, Japan

  • Kameda Medical Center

    Kamogawa, Chiba, 296-8602, Japan

  • Kanagawa Cardiovascular and Respiratory Center

    Yokohama, Kanagawa, 236-0051, Japan

  • Kanazawa University Hospital

    Kanazawa, Ishikawa-ken, 920-8641, Japan

  • Kinki University Hospital

    Sayama, Osaka, 589-8511, Japan

  • Kobe City Medical Center General Hospital

    Kobe, Hyōgo, 650-0047, Japan

  • Kobe City Medical Center West Hospital

    Kobe, Hyōgo, 653-0013, Japan

  • Kochi medical School Hospital

    Nankoku, Kochi, 783-8505, Japan

  • Kumamoto University Hospital

    Kumamoto, Kumamoto, 860-8556, Japan

  • Kurashiki Central Hospital

    Kurashiki, Okayama-ken, 710-8602, Japan

  • Kurume University Hospital

    Kurume, Fukuoka, 830-0011, Japan

  • Kyorin University Hospital

    Mitaka, Tokyo, 181-8611, Japan

  • Kyoto University Hospital

    Kyoto, Kyoto, 606-8507, Japan

  • Kyushu University Hospital.

    Fukuoka, Fukuoka, 812-8582, Japan

  • Matsuzaka City Hospital

    Matsuzaka, Mie-ken, 515-8544, Japan

  • NTT Medical Center Tokyo

    Tokyo, Tokyo, 141-8625, Japan

  • Nagasaki University Hospital

    Nagasaki, Nagasaki, 852-8510, Japan

  • Nagoya City University Hospital

    Nagoya, Aichi-ken, 467-8601, Japan

  • Nagoya University Hospital

    Nagoya, Aichi-ken, 466-8560, Japan

  • National Center for Global Health and Medicine

    Tokyo, Tokyo, 162-8655, Japan

  • National Hospital Organization Chiba-East-Hospital

    Chiba, Chiba, 260-8712, Japan

  • National Hospital Organization Himeji Medical Center

    Himeji, Hyōgo, 670-8520, Japan

  • National Hospital Organization Kinki-chuo Chest Medical Center

    Sakai, Osaka, 591-8555, Japan

  • National Hospital Organization Matsue Medical Center

    Matsue, Shimane, 690-8556, Japan

  • National Hospital Organization Minami-Okayama Medical Center

    Okayama, Okayama-ken, 701-0304, Japan

  • National Hospital Organization Tokyo Medical Center

    Tokyo, Tokyo, 152-8902, Japan

  • National Hospital Organization Tokyo National Hospital

    Kiyose, Tokyo, 204-8585, Japan

  • National Hospital Organization Yamaguchi-Ube Medical Center

    Ube, Yamaguchi, 755-0241, Japan

  • Nihon University Itabashi Hospital

    Tokyo, Tokyo, 173-8610, Japan

  • Niigata University Medical and Dental Hospital

    Niigata, Niigata, 951-8510, Japan

  • Nippon Medical School Hospital

    Tokyo, Tokyo, 113-8603, Japan

  • Ogaki Municipal Hospital

    Ōgaki, Gifu, 503-8502, Japan

  • Okinawa Chubu Hospital

    Uruma, Okinawa, 904-2293, Japan

  • Saiseikai Kumamoto Hospital

    Kumamoto, Kumamoto, 861-4193, Japan

  • Saku Central Hospital Advanced Care Center

    Saku, Nagano, 385-0051, Japan

  • Sapporo Medical University Hospital

    Sapporo, Hokkaido, 060-8543, Japan

  • Seirei Hamamatsu General Hospital

    Hamamatsu, Shizuoka, 430-8558, Japan

  • Seirei Mikatahara General Hospital

    Hamamatsu, Shizuoka, 433-8558, Japan

  • Sendai Kousei Hospital

    Sendai, Miyagi, 980-0873, Japan

  • Shiga University of Medical Science Hospital

    Ōtsu, Shiga, 520-2192, Japan

  • Shimane University Hospital

    Izumo, Shimane, 693-8501, Japan

  • Shinshu University Hospital

    Matsumoto, Nagano, 390-8621, Japan

  • Showa University Fujigaoka Hospital

    Yokohama, Kanagawa, 227-8501, Japan

  • St. Marianna University School of Medicine Hospital

    Kawasaki, Kanagawa, 216-8511, Japan

  • Suwa Central Hospital

    Chino, Nagano, 391-8503, Japan

  • Teikyo University Hospital

    Tokyo, Tokyo, 173-8605, Japan

  • Tenri Hospital

    Tenri, Nara, 632-8552, Japan

  • The Jikei University Hospital

    Tokyo, Tokyo, 105-8471, Japan

  • Toho University Omori Medical Center

    Tokyo, Tokyo, 143-8541, Japan

  • Tohoku Medical and Pharmaceutical University Hospital

    Sendai, Miyagi, 983-8512, Japan

  • Tokai University Hospital

    Isehara, Kanagawa, 259-1193, Japan

  • Tokushima University Hospital

    Tokushima, Tokushima, 770-8053, Japan

  • Tokyo Medical and Dental University

    Tokyo, Tokyo, 113-8519, Japan

  • Tokyo University Hospital

    Tokyo, Tokyo, 113-8655, Japan

  • Toranomon Hospital

    Tokyo, Tokyo, 105-8470, Japan

  • Tosei General Hospital

    Seto, Aichi-ken, 489-8642, Japan

  • Tottori University Hospital

    Yonago, Tottori, 683-0853, Japan

  • Toyama University Hospital

    Toyama, Toyama, 930-0194, Japan

  • University of Fukui Hospital

    Yoshida, Fukui, 910-1193, Japan

  • University of Occupational and Environmental Health Japan

    Kitakyushu, Hukuoka, 807-8555, Japan

  • Yamagata City Hospital Saiseikan

    Yamagata, Yamagata, 990-8533, Japan

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