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 type | Observational |
|---|---|
| Sex | All |
| Enrollment | 1500 (estimated) |
| Sponsor | Alnylam Pharmaceuticals Industry-sponsored |
| Locations | 40 sites (La Jolla, California and 39 other locations) |
| Status | Recruiting |
| Started | November 23, 2020 |
| Main results expected | December 31, 2033 |
| Study ends | December 31, 2033 |
| Registry record updated | October 13, 2026 |
| Trial ID | NCT04561518 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
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La Jolla, California, United States Recruiting -
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Los Angeles, California, United States Recruiting -
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Jacksonville, Florida, United States Recruiting -
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Iowa City, Iowa, United States Recruiting -
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Kansas City, Kansas, United States Recruiting -
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Baltimore, Maryland, United States Recruiting
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New York, New York, United States Recruiting -
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Durham, North Carolina, United States Recruiting -
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Columbus, Ohio, United States Recruiting -
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Philadelphia, Pennsylvania, United States Recruiting -
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Austin, Texas, United States Recruiting -
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Houston, Texas, United States Recruiting -
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Salvador, Brazil Recruiting -
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São Paulo, Brazil Recruiting -
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Sofia, Bulgaria Recruiting -
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Aarhus, Denmark Recruiting -
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Bordeaux, France Recruiting -
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Bron, France Recruiting -
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Créteil, France Recruiting -
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Le Kremlin-Bicêtre, France Recruiting -
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Marseille, France Recruiting -
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Berlin, Germany Recruiting -
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Giessen, Germany Recruiting -
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Hanover, Germany Recruiting -
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Jerusalem, Israel Recruiting -
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Ramat Gan, Israel Recruiting -
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Milan, Italy Recruiting -
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Naples, Italy Recruiting -
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Palermo, Italy Recruiting -
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Roma, Italy Recruiting -
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Groningen, Netherlands Recruiting -
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Lisbon, Portugal Recruiting -
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Porto, Portugal Recruiting -
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Barcelona, Spain Recruiting -
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Madrid, Spain Recruiting -
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Palma, Spain Recruiting -
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New Taipei City, Taiwan Recruiting -
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Taipei, Taiwan Recruiting -
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Boston, Massachusetts, United States Completed -
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Copenhagen, Denmark Completed
Study contacts
- Study coordinator: Alnylam Clinical Trial Information Line
- Email: clinicaltrials@alnylam.com
- Phone: 1-877-ALNYLAM
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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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.
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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.
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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.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.