Status:

RECRUITING

A Non-interventional Cohort Safety Study of Patients With hATTR-PN

Lead Sponsor:

Akcea Therapeutics

Collaborating Sponsors:

United BioSource, LLC

Conditions:

Hereditary Transthyretin Amyloidosis With Polyneuropthy

Eligibility:

All Genders

18+ years

Brief Summary

This is a prospective, non-interventional, Long-term, multinational cohort safety study of patients with Hereditary Transthyretin Amyloidosis with Polyneuropathy (hATTR-PN). The overarching goal of th...

Detailed Description

Study Rationale: hATTR-PN is an inherited, progressive, fatal disease caused by misfolded transthyretin (TTR) proteins that accumulate as amyloid fibrils predominantly in the peripheral nerves, heart...

Eligibility Criteria

Inclusion

  • Either:
  • TEGSEDI Exposed Cohort: Patients diagnosed with hATTR-PN who have taken any dose of TEGSEDI within 25 weeks prior to enrollment
  • TEGSEDI Unexposed Cohort: Patients diagnosed with hATTR-PN who have not taken any dose of TEGSEDI within 25 weeks prior to enrollment and are eligible for TEGSEDI treatment per applicable product label. Patients may take other drugs to treat hATTR-PN.
  • Clinically managed in Canada, Europe, or the US
  • Have provided appropriate written informed consent

Exclusion

  • None

Key Trial Info

Start Date :

September 21 2021

Trial Type :

OBSERVATIONAL

Allocation :

ESTIMATED

End Date :

March 31 2036

Estimated Enrollment :

240 Patients enrolled

Trial Details

Trial ID

NCT04850105

Start Date

September 21 2021

End Date

March 31 2036

Last Update

September 11 2025

Active Locations (26)

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Page 1 of 7 (26 locations)

1

Study Centre

Sofia, Bulgaria, 1431

2

Study Centre

Égkomi, Nicosia, Cyprus, 2371

3

Study Center

Lille, Cedex, France, 59037

4

Study Center

Nice, Romaine, France, 06001