ArticleFrontiers in public health2019
Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland.
Article in Frontiers in public health, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 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
27 citing papers in PubMed.
- Physician and Patient Perception of Disease, Symptomatology, and Treatment Administration Preference in Paroxysmal Nocturnal Haemoglobinuria: Results from a Real-World Survey.Advances in therapy · 2026Article
- Evidence of inequities experienced by the rare disease community with respect to receipt of a diagnosis and access to services: a scoping review of UK and international evidence.Orphanet journal of rare diseases · 2025Article
- Embracing the unknown: investigating medical communication around uncertainty and the implications on patient and family well-being.Orphanet journal of rare diseases · 2024Article
- Understanding the lived-experience and support-needs of people living with antimicrobial resistance in the UK through interpretative phenomenological analysis.Scientific reports · 2024Article
- Lower Healthcare Access and Its Association With Individual Factors and Health-Related Quality of Life in Adults With Rare Diseases in Switzerland.International journal of public health · 2024Article
- Stakeholder Perceptions of Complementary and Integrative Medicines from People Living with Rare Diseases in Northern Ireland: A Mixed Methods Study.Complementary medicine research · 2024Article
- The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: results of a cross-sectional online survey.Orphanet journal of rare diseases · 2022Article
- Needs of informal caregivers of people with a rare disease: a rapid review of the literature.BMJ open · 2022Review
- 'Advocacy groups are the connectors': Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- A Participatory Framework for Plain Language Clinical Management Guideline Development.International journal of environmental research and public health · 2022Article
- Overcoming therapeutic nihilism. Breaking bad news of amyotrophic lateral sclerosis-a patient-centred perspective in rare diseases.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2022Article
- Article
- Patient involvement in rare diseases research: a scoping review of the literature and mixed method evaluation of Norwegian researchers' experiences and perceptions.Orphanet journal of rare diseases · 2022Article
- Current challenges and opportunities in the care of patients with fibrodysplasia ossificans progressiva (FOP): an international, multi-stakeholder perspective.Orphanet journal of rare diseases · 2022Review
- The Co-Creation of a Patient Information Leaflet for Patients With the Rare Eye InfectionJournal of patient experience · 2022Article
- Towards a Comprehensive Strategy for the Management of Rare Diseases in Slovenia: Outlining an IT-Enabled Ecosystemic Approach.International journal of environmental research and public health · 2021Article
- The long and winding road: perspectives of people and parents of children with mitochondrial conditions negotiating management after diagnosis.Orphanet journal of rare diseases · 2021Article
- Access to patient oriented information-a baseline Endo-ERN survey among patients with rare endocrine disorders.Endocrine · 2021Article
- Patients' perception on the quality of care for multiple endocrine neoplasia disorders in Europe: an online survey from a patient support group.Endocrine · 2021Article
- Understanding medication safety and Charcot-Marie-Tooth disease: a patient perspective.International journal of clinical pharmacy · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
Abstract
PubMed holds no abstract for this paper.
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.