Clinical trial · Observational
Hungarian National Systemic Amyloidosis Registry
Hungarian National Systemic Amyloidosis Registry (AMYREG) - A Multi-Center, Longitudinal, Observational Survey of Patients With Systemic Amyloidosis
NCT07689331CI-TRIAL-00117268AMYREGrecruitingClinicalTrials.gov clinicaltrialsProvenance
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
This registry is an observational, multicenter, retrospective and prospective, non-pharmacological study designed to collect and analyze data from patients with systemic amyloidosis treated in inpatient and outpatient cardiology, hematology, nephrology, and neurology departments across Hungary. The registry was established in 2025.
Conditions
Conditions (4)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| AL Amyloidosis | AL Amyloidosis | ONTOLOGY_EXACT | 0.98 |
| Amyloid Cardiomyopathy | — | UNRESOLVED | — |
| ATTR Amyloidosis | — | UNRESOLVED | — |
| Systemic Amyloidosis | — | UNRESOLVED | — |
Interventions
Interventions (0)
Data not yet available
No intervention recorded.
Design
Arms and outcomes
Arms (1)
- label
- Systemic Amyloidosis Patients
- description
- Patients with systemic amyloidosis evaluated and treated at participating cardiology, nephrology, neurology and hematology departments in Hungary.
Primary outcomes (31)
- measure
- Sex of Participants at Diagnosis
- timeFrame
- Baseline
- description
- Sex (male or female as recorded in the medical record) of participants at the time of systemic amyloidosis diagnosis
- measure
- Age at Diagnosis
- timeFrame
- Baseline
- description
- Age of participants in years at the time of systemic amyloidosis diagnosis
- measure
- Place of Residence at Diagnosis (Postal Code Level)
- timeFrame
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 18 Years
Show eligibility criteria text
Inclusion Criteria: * Diagnosis of systemic amyloidosis * Patients aged ≥18 years at the time of enrollment * Signed informed consent form by the patient * Treating physician's consent * Availability of accessible medical history Exclusion Criteria: * Lack of informed consent in the prospective study
References
Publications (5)
- BACKGROUNDJaiswal V, Agrawal V, Khulbe Y, Hanif M, Huang H, Hameed M, Shrestha AB, Perone F, Parikh C, Gomez SI, Paudel K, Zacks J, Grubb KJ, De Rosa S, Gimelli A. Cardiac amyloidosis and aortic stenosis: a state-of-the-art review. Eur Heart J Open. 2023 Oct 12;3(6):oead106. doi: 10.1093/ehjopen/oead106. eCollection 2023 Nov. PMID 37941729
- BACKGROUNDDevesa A, Camblor Blasco A, Pello Lazaro AM, Askari E, Lapena G, Gomez Talavera S, Taibo Urquia M, Rodriguez Olleros C, Tunon J, Ibanez B, Acena A. Prevalence of transthyretin amyloidosis in patients with heart failure and no left ventricular hypertrophy. ESC Heart Fail. 2021 Aug;8(4):2856-2865. doi: 10.1002/ehf2.13360. Epub 2021 May 8. PMID 33963812
- BACKGROUNDPozsonyi Z, Pesko G, Takacs H, Csuka D, Nagy V, Szilagyi A, Hategan L, Muk B, Csanyi B, Nyolczas N, Dezsi L, Molnar JM, Csillik A, Revesz K, Ivanyi B, Szabo F, Birtalan K, Masszi T, Aranyi Z, Sepp R. Variant Transthyretin Amyloidosis (ATTRv) in Hungary: First Data on Epidemiology and Clinical Features. Genes (Basel). 2021 Jul 28;12(8):1152. doi: 10.3390/genes12081152. PMID 34440326
- BACKGROUNDWechalekar AD, Gillmore JD, Hawkins PN. Systemic amyloidosis. Lancet. 2016 Jun 25;387(10038):2641-2654. doi: 10.1016/S0140-6736(15)01274-X. Epub 2015 Dec 21. PMID 26719234
- BACKGROUNDRavichandran S, Lachmann HJ, Wechalekar AD. Epidemiologic and Survival Trends in Amyloidosis, 1987-2019. N Engl J Med. 2020 Apr 16;382(16):1567-1568. doi: 10.1056/NEJMc1917321. No abstract available. PMID 32294353