Evidence map›Paper›PMID 42228699›Full record

ArticlePloS one2026

On the crossroads of interdisciplinary medicine in amyloidosis - study protocol for a single-center interdisciplinary registry study.

Helena Pernice, Gina Barzen, Jakub Piwowarski, Harisa Muratovic-Colic, Anne Pankow, Vera von Landenberg-Roberg, Stephan Bohl, Eva Schrezenmeier, Paul J Wetzel, Nicolas W Wieder and 14 more

Erratum issuedAbstract read
In one paragraph

Article in PloS one, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

24 authors.

Helena PerniceAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.ORCID https://orcid.org/0009-0001-8711-5526
Gina BarzenAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Jakub PiwowarskiAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.ORCID https://orcid.org/0009-0000-0941-9084
Harisa Muratovic-ColicAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Anne PankowAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Vera von Landenberg-RobergAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Stephan BohlAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Eva SchrezenmeierAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Paul J WetzelAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.ORCID https://orcid.org/0009-0001-9393-5512
Nicolas W WiederAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Gunnar FißAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Elisabeth BlüthnerAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Fabian KnebelAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Daniel MessroghliMedizinische Universität Lausitz - Carl Thiem, Department of Cardiology, Rhythmology and Angiology, Cottbus, Germany.
Stefanie M WerhahnAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Jan GröschelAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Anna-Karina B MaierAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.ORCID https://orcid.org/0000-0002-8095-0254
Shideh SchönfeldAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Christoph WetzAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Jeanette Schulz-MengerAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Bettina HeideckerAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Axel NogaiAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Sebastian SpethmannAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.
Katrin HahnAmyloidosis Center Charité Berlin (ACCB), Charité Universitätsmedizin Berlin, Germany.ORCID https://orcid.org/0000-0002-6013-0072

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundSystemic amyloidosis comprises a heterogeneous group of rare diseases characterised by extracellular deposition of misfolded protein fibrils, leading to progressive organ dysfunction. Due to the variability in clinical presentation and course, collection of system-specific and longitudinal data is essential for understanding disease progression, treatment response and patient outcomes. At the Amyloidosis Center Charité Berlin (ACCB), a prospective amyloidosis registry has been established to systematically collect clinical, laboratory, imaging and patient-reported data with the aim of improving the characterization of the diseases and facilitating translational research.

methodsThis is a single-center prospective registry study that enrols patients diagnosed with systemic amyloidosis. The registry includes demographic data, multidisciplinary clinical phenotyping, biomarkers, biobanking, genetic information, imaging studies, and patient reported outcomes. Here, we describe the standardised protocol for diagnostic workup, baseline and longitudinal data collection, and disease-specific follow-up algorithms. Data will be collected digitally in interoperable data formats to ensure shareability in accordance with GDPR-policies. DISCUSSION: This registry will serve as a resource for characterizing amyloidosis as a rare disease model in a real-world setting and identifying patterns in disease progression and treatment efficacy. By prospectively collecting high-quality longitudinal data, the study aims to generate insights that can inform clinical decision-making, improve risk stratification and support future intervention studies. In addition, the registry enables collaboration in the discovery of biomarkers and new therapeutic approaches. Ongoing analysis of this cohort will provide a basis for the further development of personalised treatment strategies and the improvement of patient care. ETHICS AND DISSEMINATION: Ethical approval was given by the local ethic committee. Dissemination of data in publications with different scientific observational and correlational questions is planned. Clinical trial registration: DRKS00032002.

Indexed as

AmyloidosisRegistriesBiomarkersDisease ProgressionFemaleHumansProspective StudiesBiomarkers

Identifiers

PMID42228699
PMCPMC13229368

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.