NCT06365593Completed
hATTR Polyneuropathy in 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
Source: ClinicalTrials.gov · Last updated 25 May 2025
Brief summary (registry, in English)
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.
- Status (registry)
- Completed
- Study type
- Observational
- Enrollment
- 100 (actual)
- First submitted
- 1 Mar 2024
- Start date
- 29 Dec 2023
- Primary completion date
- 30 May 2024
- Lead sponsor
- AstraZeneca
- Diseases
- Amyloidosis
- NCT number
- NCT06365593
What you commit to
- Study type: Observational
- Participants enrolled: 100
- From 29 Dec 2023 to the primary completion date, 30 May 2024
- 3 sites in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Prior treatment
- 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.
Who the study is looking for
- 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.
Sex: All · Does not accept healthy volunteers
Sites (3)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| - Coordinator of this site? Confirm its status | Kazan' | Russia | Unknown status |
| - Coordinator of this site? Confirm its status | Moscow | Russia | Unknown status |
| - Coordinator of this site? Confirm its status | Saint Petersburg | Russia | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.