ArticleJournal of atherosclerosis and thrombosis2017
Design of the Familial Hypercholesterolaemia Australasia Network Registry: Creating Opportunities for Greater International Collaboration.
Article in Journal of atherosclerosis and thrombosis, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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
11 citing papers in PubMed, 31 citations in OpenAlex.
- Isfahan familial hypercholesterolemia cohort (IFHC) study: Methods, insights and early results.ARYA atherosclerosis · 2026Article
- Does the registry speak your language? A case study of the Global Angelman Syndrome Registry.Orphanet journal of rare diseases · 2023Article
- Familial Hypercholesterolemia in Asia Pacific: A Review of Epidemiology, Diagnosis, and Management in the Region.Journal of atherosclerosis and thrombosis · 2021Review
- Familial Hypercholesterolemia (FH) in Iran: Findings from the Four-Year FH Registry.Journal of lipids · 2021Article
- Familial hypercholesterolaemia: evolving knowledge for designing adaptive models of care.Nature reviews. Cardiology · 2020Review
- Improving hypertension surveillance from a data management prospective: Data requirements for implementation of population-based registry.Journal of education and health promotion · 2020Article
- The Gulf Familial Hypercholesterolemia Registry (Gulf FH): Design, Rationale and Preliminary Results.Current vascular pharmacology · 2020Article
- RD-RAP: beyond rare disease patient registries, devising a comprehensive data and analytic framework.Orphanet journal of rare diseases · 2019Article
- Knowns and unknowns in the care of pediatric familial hypercholesterolemia.Journal of lipid research · 2017Review
- A web-based, patient driven registry for Angelman syndrome: the global Angelman syndrome registry.Orphanet journal of rare diseases · 2017Article
- Comprehending the Health Informatics Spectrum: Grappling with System Entropy and Advancing Quality Clinical Research.Frontiers in public health · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
20 authors at 13 institutions in 2 countries.
Funding
Abstract
Familial Hypercholesterolemia (FH) is the most common and serious monogenic disorder of lipoprotein metabolism that leads to premature coronary heart disease. There are over 65,000 people estimated to have FH in Australia, but many remain undiagnosed. Patients with FH are often under-treated, but with early detection, cascade family testing and adequate treatment, patient outcomes can improve. Patient registries are key tools for providing new information on FH and enhancing care worldwide. The development and design of the FH Australasia Network Registry is a crucial component in the comprehensive model of care for FH, which aims to provide a standardized, high-quality and cost-effective system of care that is likely to have the highest impact on patient outcomes. Informed by stakeholder engagement, the FH Australasia Network Registry was collaboratively developed by government, patient and clinical networks and research groups. The open-source, web-based Rare Disease Registry Framework was the architecture chosen for this registry owing to its open-source standards, modular design, interoperability, scalability and security features; all these are key components required to meet the ever changing clinical demands across regions. This paper provides a high level blueprint for other countries and jurisdictions to help inform and map out the critical features of an FH registry to meet their particular health system needs.
Indexed as
Identifiers
What 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.