Clinical trial Recruiting at 38 sites Observational

Observational study of patients with ATTR amyloidosis

Official title: ConTTRibute: A Global Observational Multicenter Long-Term Study of Patients With Transthyretin (TTR)-Mediated Amyloidosis (ATTR Amyloidosis)

Run by Alnylam Pharmaceuticals · NCT04561518 · Data updated 2026-11-12

This study looks at the characteristics of people with ATTR amyloidosis and tests how well existing treatments work for them in real life.

Quick facts

Study typeObservational
SexAll
Enrollment1500 (estimated)
SponsorAlnylam Pharmaceuticals
Industry-sponsored
Locations40 sites (La Jolla, California and 39 other locations)
StatusRecruiting
StartedNovember 23, 2020
Main results expectedDecember 31, 2033
Study endsDecember 31, 2033
Registry record updatedOctober 13, 2026
Trial IDNCT04561518 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates include individuals diagnosed with ATTR amyloidosis or pre-symptomatic carriers of known TTR variants.

Probably not a fit

Patients currently enrolled in clinical trials for investigational agents may not benefit from this study.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This study aims to describe the epidemiological and clinical characteristics of patients with transthyretin-mediated amyloidosis (ATTR amyloidosis). It will also evaluate the safety and effectiveness of existing treatments, patisiran and vutrisiran, in real-world clinical settings. Additionally, the study will monitor disease progression in individuals who are pre-symptomatic carriers of known disease-causing TTR variants. The research will be conducted in Germany and select sites in the United States.

Why it matters

Potential benefit: If successful, this study could enhance understanding of ATTR amyloidosis and improve management strategies for patients.

How similar studies have gone: Other studies have shown success in characterizing ATTR amyloidosis, but this observational approach may provide novel insights into real-world management.

Who can join: the full rules

Show full inclusion / exclusion criteria
Inclusion Criteria:

* Diagnosis of ATTR amyloidosis or documented known disease-causing TTR variant for the cohort of pre-symptomatic carriers
* Germany Only: Patients must be treated per the summary of product characteristics (SmPC) for any approved treatment for ATTR amyloidosis

Exclusion Criteria:

* Current enrollment in a clinical trial for any investigational agent

Where it's running

  • Clinical Trial Site
    La Jolla, California, United States
    Recruiting
  • Clinical Trial Site
    Los Angeles, California, United States
    Recruiting
  • Clinical Trial Site
    Jacksonville, Florida, United States
    Recruiting
  • Clinical Trial Site
    Iowa City, Iowa, United States
    Recruiting
  • Clinical Trial Site
    Kansas City, Kansas, United States
    Recruiting
  • Clinical Trial Site
    Baltimore, Maryland, United States
    Recruiting
Show 34 more locations
  • Clinical Trial Site
    New York, New York, United States
    Recruiting
  • Clinical Trial Site
    Durham, North Carolina, United States
    Recruiting
  • Clinical Trial Site
    Columbus, Ohio, United States
    Recruiting
  • Clinical Trial Site
    Philadelphia, Pennsylvania, United States
    Recruiting
  • Clinical Trial Site
    Austin, Texas, United States
    Recruiting
  • Clinical Trial Site
    Houston, Texas, United States
    Recruiting
  • Clinical Trial Site
    Salvador, Brazil
    Recruiting
  • Clinical Trial Site
    São Paulo, Brazil
    Recruiting
  • Clinical Trial Site
    Sofia, Bulgaria
    Recruiting
  • Clinical Trial Site
    Aarhus, Denmark
    Recruiting
  • Clinical Trial Site
    Bordeaux, France
    Recruiting
  • Clinical Trial Site
    Bron, France
    Recruiting
  • Clinical Trial Site
    Créteil, France
    Recruiting
  • Clinical Trial Site
    Le Kremlin-Bicêtre, France
    Recruiting
  • Clinical Trial Site
    Marseille, France
    Recruiting
  • Clinical Trial Site
    Berlin, Germany
    Recruiting
  • Clinical Trial Site
    Giessen, Germany
    Recruiting
  • Clinical Trial Site
    Hanover, Germany
    Recruiting
  • Clinical Trial Site
    Jerusalem, Israel
    Recruiting
  • Clinical Trial Site
    Ramat Gan, Israel
    Recruiting
  • Clinical Trial Site
    Milan, Italy
    Recruiting
  • Clinical Trial Site
    Naples, Italy
    Recruiting
  • Clinical Trial Site
    Palermo, Italy
    Recruiting
  • Clinical Trial Site
    Roma, Italy
    Recruiting
  • Clinical Trial Site
    Groningen, Netherlands
    Recruiting
  • Clinical Trial Site
    Lisbon, Portugal
    Recruiting
  • Clinical Trial Site
    Porto, Portugal
    Recruiting
  • Clinical Trial Site
    Barcelona, Spain
    Recruiting
  • Clinical Trial Site
    Madrid, Spain
    Recruiting
  • Clinical Trial Site
    Palma, Spain
    Recruiting
  • Clinical Trial Site
    New Taipei City, Taiwan
    Recruiting
  • Clinical Trial Site
    Taipei, Taiwan
    Recruiting
  • Clinical Trial Site
    Boston, Massachusetts, United States
    Completed
  • Clinical Trial Site
    Copenhagen, Denmark
    Completed

Study contacts

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

  • Hungarian National Systemic Amyloidosis Registry

    This registry collects medical data from adults with systemic amyloidosis across Hungary to help understand how the disease is diagnosed and treated in real-world practice.

    Recruiting at 12 sites Semmelweis University · Balatonfüred and 11 other locations · NCT07689331

  • Understanding the characteristics and treatment of patients with ATTR amyloidosis

    This study is looking to understand the experiences and treatments of people with ATTR amyloidosis to see how the disease affects their lives and how it is managed over time.

    Recruiting at 5 sites AstraZeneca · Eden Prairie, Minnesota and 28 other locations · NCT06355934

  • Registry for patients with ATTR amyloidosis

    This study is creating a detailed registry for people with ATTR amyloidosis to track their health over time and help doctors understand the disease better.

    Recruiting Fondazione IRCCS Policlinico San Matteo di Pavia · Legnano, MI and 29 other locations · NCT05444920

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.