Observing real-world care of patients with transthyretin amyloidosis
Follows adults with ATTR amyloidosis, a rare protein-build-up disease, and their treatments over time.
Key facts
- Who runs it
- AstraZeneca
- Where
- Aachen, Berlin, Cologne, Frankfurt am Main, Hanover, Homburg, Mainz, and Würzburg, GermanySee the 8 sitesAlso in 5 other countries, 64 sites
- Trial code
- Registry title
- Non-interventional Study of Patients With Transthyretin (ATTR) Amyloidosis
- Status
- Recruiting
- People taking part
- 1,850 people, planned
- Started
- 25 Jun 2024
- Expected to end
- 31 Dec 2031
- Type of study
- Observational, 3 groups
- Treatments tested
- Treatment of transthyretin (ATTR) amyloidosis in observational study setting
- Record updated
- 23 September 2026
Who can take part
AI summary
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for adults with a confirmed diagnosis of transthyretin (ATTR) amyloidosis who have symptoms. It follows them over time and records their real-world care and outcomes.
- Age
- 18 years or older
- Sex
- All sexes can join
- Disease stage
- Confirmed ATTR amyloidosis with symptoms. People with no symptoms cannot join.
Main reasons for not taking part
- Taking part in another interventional trial for ATTR amyloidosis
- Signs of primary or light chain amyloidosis (AL) or serum protein A amyloidosis (AA)
- No symptoms of ATTR amyloidosis, including people who only carry an ATTR mutation
- Being involved in planning or running this study
The registry criteria, word for word
Show all 8 criteriaShow less
Who can take part
- Patient willing and able to provide written informed consent to participate in the study
- Confirmed diagnosis of amyloid transthyretin (ATTR) amyloidosis
- Aged ≥18 years at the time of signing the informed consent
- Patient willing and able to participate in collection of electronic patient reported outcomes (PROs)
Who cannot take part
- Concurrent participation in any interventional trial for ATTR amyloidosis
- Patients with evidence of primary or light chain amyloidosis (AL) or serum protein A amyloidosis (AA)
- Involvement in the planning and/or conduct of the current study
- Asymptomatic patients with ATTR amyloidosis and asymptomatic ATTR mutation carriers
Check if you might fit
Answer for yourself. This is not a decision: only the study team can say whether you can take part.
- Are you between 18 and 130 years old?
Where in Germany
Also in 5 other countries, 64 sites
- AachenHospital not named in the registryTaking people
- BerlinHospital not named in the registryTaking people
- CologneHospital not named in the registryTaking people
- Frankfurt am MainHospital not named in the registryTaking people
- HanoverHospital not named in the registryTaking people
- HomburgHospital not named in the registryTaking people
- MainzHospital not named in the registryTaking people
- WürzburgHospital not named in the registryNot yet recruiting
About the trial
What the trial wants to find out
The MaesTTRo study aims to enroll a global cohort of patients with transthyretin (ATTR) amyloidosis to longitudinally observe the natural course of the disease and describe real-world treatment patterns and outcomes. In addition, information on the effectiveness of ATTR amyloidosis treatments, including eplontersen, which is a ligand-conjugated antisense oligonucleotide gene silencing treatment targeting activity against both the mutant and wild-type TTR protein, will be collected.
The 3 groups in the trial
- ATTR cardiomyopathy (ATTR-CM)
Patients with ATTR-CM at enrollment
Treatment: Treatment of transthyretin (ATTR) amyloidosis in observational study setting
- Hereditary polyneuropathy (ATTRv-PN)
Patients with ATTRv-PN at enrollment
Treatment: Treatment of transthyretin (ATTR) amyloidosis in observational study setting
- ATTR-Mixed
Patients with a mixed ATTR amyloidosis phenotype
Treatment: Treatment of transthyretin (ATTR) amyloidosis in observational study setting
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- A Non-interventional, Prospective, Multi-country Study Collecting Real-world Data on the Characteristics, Treatment Patterns, and Outcomes of Patients With Transthyretin (ATTR) Amyloidosis
- Plain-language title
- Observing real-world care of patients with transthyretin amyloidosisGenerated from the registry record. The registry title is the official one.
- AI summary
- From the trial's eligibility criteria. Read by machine on 12 November 2026.
- Fit questions
- Built from NCT06465810, who can take part
- Record updated
- 23 September 2026