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Massive ATTR amyloidosis study aims to map disease journeys

NCT ID NCT06355934

Knowledge-focused Sponsor: AstraZeneca 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Sep 10, 2026 · Updated 6 times

Summary

This observational study will analyze medical records from over 52,000 people with ATTR amyloidosis, a rare disease where abnormal proteins build up in organs. Researchers want to learn about patients' symptoms, treatments, and outcomes in everyday medical practice. No new treatments are being tested; the goal is to gather information to improve understanding of the disease.

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 help doctors better understand how ATTR amyloidosis progresses and how it is treated in real life, potentially improving future care.
What could go wrong
This is an observational study that does not test a new treatment, so it will not directly improve patient health. Results depend on the quality of existing medical records.

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 52,121 people

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

Started

Aug 2023

Expected to finish

Nov 2026

An estimate. End dates often move.

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

This study will include data from patients aged \> 18 years with a diagnosis of ATTR amyloidosis or other evidence confirming ATTR amyloidosis. Patients will be followed until exit from the database (loss to follow-up), death, or end of database period (data collection). Baseline data will apply a lookback period of 12 months. Patient identification will be from 2014-01-01 onwards

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: * Patients aged \>18 years at study index date AND * A reported diagnosis code for amyloidosis OR * A claim for ATTR-specific treatment OR * A positive biopsy for amyloidosis and positive immunostaining result of biopsy for ATTR Exclusion Criteria: * Evidence of primary (AL) and secondary (AA) amyloidosis AND/OR * At least one claim/procedure code for stem cell transplant or at least two claims/procedure codes for chemotherapy and autoimmune disease drugs which may represent AL (primary) or AA (secondary) amyloidosis treatments

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Conditions

The condition(s) this trial relates to.

hereditary amyloidosis wild type ATTR amyloidosis

As listed by the trial registrant

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

Attr amyloidosis

How to take part

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

  1. The places running it

    5 sites in 2 countries. 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

  • Research Site

    COMPLETED

    Eden Prairie, Minnesota, 55344, United States

  • Research Site

    COMPLETED

    Calgary, Alberta, T2P 4K7, Canada

  • Research Site

    COMPLETED

    Beijing, China

  • Research Site

    COMPLETED

    Changsha, China

  • Research Site

    COMPLETED

    Chengdu, China

  • Research Site

    COMPLETED

    Guangzhou, China

  • Research Site

    COMPLETED

    Wuhan, China

  • Research Site

    COMPLETED

    Horsens, Denmark

  • Research Site

    COMPLETED

    Berlin, Germany

  • Research Site

    RECRUITING

    Lecce, Italy

  • Research Site

    RECRUITING

    Messina, Italy

  • Research Site

    RECRUITING

    Milan, Italy

  • Research Site

    COMPLETED

    Tokyo, Japan

  • Research Site

    RECRUITING

    Lisbon, Portugal

  • Research Site

    RECRUITING

    Porto, Portugal

  • Research Site

    COMPLETED

    A Coruña, Spain

  • Research Site

    COMPLETED

    Barcelona, Spain

  • Research Site

    COMPLETED

    Bilbao, Spain

  • Research Site

    COMPLETED

    El Palmar, Spain

  • Research Site

    COMPLETED

    Huelva, Spain

  • Research Site

    COMPLETED

    Las Palmas de Gran Canaria, Spain

  • Research Site

    COMPLETED

    Madrid, Spain

  • Research Site

    COMPLETED

    Majadahonda, Spain

  • Research Site

    COMPLETED

    Palma de Mallorca, Spain

  • Research Site

    COMPLETED

    Salamanca, Spain

  • Research Site

    COMPLETED

    Valencia, Spain

  • Research Site

    COMPLETED

    Södertälje, Sweden

  • Research Site

    COMPLETED

    Umeå, Sweden

  • Research Site

    COMPLETED

    London, United Kingdom

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