ReviewInnere Medizin (Heidelberg, Germany)2026
[The role of disease-specific registries in the field of rare diseases: opportunities, benefits and pitfalls].
Review in Innere Medizin (Heidelberg, Germany), 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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.
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.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIndividuals affected by rare diseases often describe the path to diagnosis as an odyssey, and even after diagnosis, there is a need for improvement in the subsequent care. Registries represent one of many building blocks for improving healthcare and research.
objectivesWhat can registries achieve in the field of rare diseases, and what kind of challenges arise?
methodsThis article demonstrates what registries can achieve in the field of rare diseases with concrete examples and provides insights into the technical basics, as well as the topics of ethics and data protection, based on current literature.
resultsMulticentric data collection in registries is especially important in the field of rare diseases due to the small number of cases. However, this presents particular challenges regarding technical implementation, data protection aspects and financial resources.
conclusionRegistries are an important tool for improving the care of individuals affected by rare diseases. However, a simplification and standardisation of the framework conditions would be desirable.
Indexed as
Identifiers
41264006What OpenQuestion holds
Registered trials
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.