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hATTR Polyneuropathy in Russia

CompletedN/A

Sponsor: AstraZeneca

Conditions: Hereditary Transthyretin Amyloidosis

Countries: Russia

A multicenter observational retrosPective Registry of patIents with transthyretin aMyloid polynEuropathy (hATTR-PN) and chRonic idiopathic axonal polyneuropathy (CIAP) in the population of the Russian Federation (PRIMER) There are no comprehensive epidemiological data on patients with hereditary ATTR-PN (hATTR-PN) and CIAP in the Russian Federation. Therefore, there is a need to conduct a large-scale observational study in the Russian population to obtain information on clinical, electrophysiological and demographic characteristics of patients with hATTR-PN and CIAP. Obtaining the study data will help to identify the patients with axonal polyneuropathy, who deserve TTR gene sequencing, and therefore to allow early treatment and potentially modify disease progression in patients.

Eligibility overview

Sex: ALL

Healthy volunteers: No

Study type: OBSERVATIONAL

Eligibility criteria

Inclusion Criteria:

* Patients with hATTR-PN or CIAP ;
* The diagnosis of hATTR-PN or CIAP was established between the 1st January 2017 and the 1st March 2024;
* Presence of at least 1 month between the date of hATTR-PN or CIAP diagnosis and the date of inclusion;
* Age ≥ 18 years at the time of hATTR-PN or CIAP diagnosis.

Exclusion Criteria:

* The participation in any clinical trial with investigational product from the moment of diagnosis of ATTR PN or CIAP until the end of retrospective follow-up period.

Locations (3)

Kazan', Russia
Moscow, Russia
Saint Petersburg, Russia