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New study tracks PNH patients in china to uncover disease patterns

NCT ID NCT06154512

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
Running, but no longer taking on new participants.
Completed This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 24, 2026 · Last updated Jun 27, 2026 · Updated 2 times

Summary

This completed study followed 724 people in China with paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disorder. Researchers aimed to better understand how the disease progresses and how patients respond to different treatments, including the newly available drug eculizumab. The study collected data on symptoms, complications like blood clots and kidney failure, and treatment patterns 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 study could provide a clearer picture of how PNH progresses in Chinese patients and how well current treatments work in the real world.
What could go wrong
This is an observational study, not a treatment trial, so it won't directly test new therapies. Results may not apply to other populations.

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

724 people

The number who actually took part.

Started

Nov 2023

Finished

Dec 2025

Lead sponsor

A company

The lead sponsor is a pharmaceutical, biotech, or medical-device company.

Who can take part

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

Who is studied

Study Population: Number of patients (estimate): 1000; Inclusion Criteria 1. Patients of any age; 2. Diagnosed PNH with detected proportion of PNH clone cells of at least 1%; 3. Patient or patient's family must be willing and able to give written informed consent. Exclusion Criteria 1. Current or previous treatment with a non-eculizumab complement inhibitor; 2. Patients in other PNH clinical trials. 3. Unable to give written informed consent.

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 1. Patients of any age; 2. Diagnosed PNH with detected proportion of PNH clone cells of at least 1%; 3. Patient or patient's family must be willing and able to give written informed consent. Exclusion Criteria 1. Current or previous treatment with a non-eculizumab complement inhibitor; 2. Patients in other PNH clinical trials. 3. Unable to give written informed consent.

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Conditions

The condition(s) this trial relates to.

Hemoglobinuria, Paroxysmal paroxysmal nocturnal hemoglobinuria

As listed by the trial registrant

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

Contacts and locations

Locations

  • Research Site

    Hefei, Anhui, 230002, China

  • Research Site

    Beijing, Beijing Municipality, 100000, China

  • Research Site

    Beijing, Beijing Municipality, 100044, China

  • Research Site

    Guangzhou, Guangdong, 510080, China

  • Research Site

    Guangzhou, Guangdong, 510180, China

  • Research Site

    Guangzhou, Guangdong, 510515, China

  • Research Site

    Nanning, Guangxi, 530021, China

  • Research Site

    Guiyang, Guizhou, 550004, China

  • Research Site

    Shijiazhuang, Hebei, 050000, China

  • Research Site

    Harbin, Heilongjiang, 150001, China

  • Research Site

    Zhengzhou, Henan, 450003, China

  • Research Site

    Zhengzhou, Henan, 450052, China

  • Research Site

    Zhengzhou, Henan, 463599, China

  • Research Site

    Wuhan, Hubei, 430000, China

  • Research Site

    Wuhan, Hubei, 430030, China

  • Research Site

    Changsha, Hunan, 410005, China

  • Research Site

    Changsha, Hunan, 410008, China

  • Research Site

    Nanjing, Jiangsu, 210029, China

  • Research Site

    Nantong, Jiangsu, 226001, China

  • Research Site

    Xuzhou, Jiangsu, 221002, China

  • Research Site

    Nanchang, Jiangxi, 330006, China

  • Research Site

    Nanchang, Jiangxi, 330008, China

  • Research Site

    Changchun, Jilin, 130021, China

  • Research Site

    Shenyang, Liaoning, 110001, China

  • Research Site

    Jinan, Shandong, 250000, China

  • Research Site

    Qingdao, Shandong, 266000, China

  • Research Site

    Zibo, Shandong, 255090, China

  • Research Site

    Linyi, Shangdong, 276034, China

  • Research Site

    Shanghai, Shanghai Municipality, 200040, China

  • Research Site

    Shanghai, Shanghai Municipality, 200336, China

  • Research Site

    Taiyuan, Shanxi, 030000, China

  • Research Site

    Xi’an, Shanxi, 710061, China

  • Research Site

    Xi’an, Shanxi, 710068, China

  • Research Site

    Chengdu, Sichuan, 610041, China

  • Research Site

    Chengdu, Sichuan, 610072, China

  • Research Site

    Tianjin, Tianjin Municipality, 300020, China

  • Research Site

    Tianjin, Tianjin Municipality, 300052, China

  • Research Site

    Tianjin, Tianjin Municipality, 300190, China

  • Research Site

    Kunming, Yunnan, 650034, China

  • Research Site

    Hangzhou, China

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