ReviewRespiratory research2021
Educational aspects of rare and orphan lung diseases.
Review in Respiratory research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 1 of them a synthesis that pooled it.
What it found
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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.
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Who cites it
23 citing papers in PubMed, 1 synthesis or guideline pooled it, 28 citations in OpenAlex.
- Impact of time to diagnosis in patients with progressive fibrotic ILD: a systematic review.BMJ open respiratory research · 2026Pooled it
- Awareness and knowledge gaps about pediatric rare disease among anesthesia practitioners in China: a survey-based study.BMC pediatrics · 2026Article
- Translating multi-omics into healthcare: requisites for scalable and equitable implementation.Human genomics · 2026Review
- A nationwide survey of awareness and understanding of NUT carcinoma among clinicians in China.BMC health services research · 2026Article
- Advancing practitioner knowledge in interstitial lung disease: a review of free, online resources.ATS scholar · 2026Review
- Living with pulmonary fibrosis: how affected people experience disease-related information, health services and self-management strategies.BMJ open respiratory research · 2025Article
- Specific content for education and self-management programmes for people with pulmonary fibrosis: a co-creation, multiphase, mixed-method study.ERJ open research · 2025Article
- Considering Patient Perspective Through Visual Representatives: Telemedicine Gives Voice to Rare Interstitial Lung Disease Patients.Thoracic research and practice · 2025Article
- Effects of continuing medical education on emergency trainees' rare disease knowledge and attitude: a single-center study.BMC medical education · 2025Article
- Patient-centered care in pulmonary fibrosis: access, anticipate, and act.Respiratory research · 2024Review
- Rare diseases: What rheumatologists need to know?Advances in rheumatology (London, England) · 2024Review
- Rare disease 101: an online resource teaching on over 7000 rare diseases in one short course.Orphanet journal of rare diseases · 2024Article
- Speaking of the "Devil": Diagnostic Errors in Interstitial Lung Diseases.Journal of personalized medicine · 2023Review
- Challenges associated with delayed definitive diagnosis among Japanese patients with specific intractable diseases: A cross-sectional study.Intractable & rare diseases research · 2023Article
- [Current situation of rare diseases in Bogotá: Notification to Sivigila from 2019 to 2022].Revista de salud publica (Bogota, Colombia) · 2023Article
- The flare of care for rare: per aspera ad astra for rare lung diseases!European respiratory review : an official journal of the European Respiratory Society · 2023Article
- Literature Review on Health Emigration in Rare Diseases-A Machine Learning Perspective.International journal of environmental research and public health · 2023Review
- The diagnostic trajectories of Danish patients with autoimmune rheumatologic disease associated interstitial lung disease: an interview-based study.European clinical respiratory journal · 2023Article
- Rare disease education in Europe and beyond: time to act.Orphanet journal of rare diseases · 2022Article
- Diagnostic delay in rare diseases: data from the Spanish rare diseases patient registry.Orphanet journal of rare diseases · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 6 institutions in 5 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
People with rare lung diseases often suffer the burden of delayed diagnosis, limited treatment options, and difficulties in finding expert physicians. One of the reasons for the delay in diagnosis is the limited training for healthcare practitioners on rare diseases. This review explores the main concerns and needs for education on rare lung diseases from the perspectives of both patients and professionals. Despite the increasing interest in rare lung disorders and some recent breakthrough developments on the management of several diseases, healthcare professionals, including general practitioners and hospital workers, receive little education on this topic. Nonetheless, many healthcare professionals show much interest in receiving further training, especially on diagnosis. Patients and families want easier access to high-quality education materials to help them manage their own disease. Well-educated patients are better equipped to deal with chronic diseases, but patient education can be challenging as patients' individual health issues, and diverse backgrounds can create significant barriers. Raising more awareness for rare lung diseases and further development of patient-centred international expert networks like the European Reference Network on Rare Lung Diseases (ERN-LUNG), which includes both experts and patient representatives, are essential for improving care and education on rare lung diseases. Initiatives such as the Rare Disease Day, have been successful in increasing awareness for rare conditions. The development of online tools for accessing information has had positive effects and should be further supported and extended in the future.
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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.