ReviewFrontiers in public health2021
Research and Management of Rare Diseases in the COVID-19 Pandemic Era: Challenges and Countermeasures.
Review in Frontiers in public health, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 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.
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, 1 synthesis or guideline pooled it, 40 citations in OpenAlex.
- Caring for People with Rare Diseases: A Systematic Review of the Challenges of, and Strategies for Dealing with, COVID-19.International journal of environmental research and public health · 2023Pooled it
- Patients With Berardinelli-Seip and Silver-Russell Syndromes Hospitalized due to Coronavirus Disease (COVID)-19 in Brazil: A Four-Year Case Report Profile.Case reports in infectious diseases · 2026Article
- Integrative research and innovation strategy for rare diseases. Insights from the 5-year European joint programme on rare diseases, including analysis to inform recommendations for future actions.Health research policy and systems · 2025Article
- A retrospective study of insurance coverage status and economic cost of rare diseases in Hainan Province.Scientific reports · 2025Article
- Research staff's experiences of how the COVID-19 pandemic impacted recruitment for a paediatric network study.International journal of qualitative studies on health and well-being · 2024Article
- The impact of COVID-19 pandemic on dermatology patients with rare skin diseases.Dermatology reports · 2024Article
- [Consequences of a pandemic for people living with rare diseases and recommendations for maintaining healthcare and participation].Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2024Article
- Living with rare genetic disease during the COVID-19 pandemic: A qualitative study of adolescents and young adults with Li-Fraumeni syndrome.Rare (Amsterdam, Netherlands) · 2024Article
- Impact of the COVID-19 pandemic on health care and daily life of patients with rare diseases from the perspective of patient organizations - a qualitative interview study.Orphanet journal of rare diseases · 2023Article
- Impact of COVID-19 on a rare disease (uveal melanoma) in a national reference unit of intraocular tumors in Spain.Archivos de la Sociedad Espanola de Oftalmologia · 2023Observational
- Health-related quality of life (HRQoL) and psychological impact of the COVID-19 pandemic on patients with myasthenia gravis.Intractable & rare diseases research · 2023Article
- [Impact of COVID-19 on a rare disease (uveal melanoma) in a national reference unit of intraocular tumors in Spain].Archivos de la Sociedad Espanola de Oftalmologia · 2023Article
- Psychological distress of adult patients consulting a center for rare and undiagnosed diseases: a cross-sectional study.Orphanet journal of rare diseases · 2023Article
- Investigating the performance of machine learning algorithms in predicting the survival of COVID-19 patients: A cross section study of Iran.Health science reports · 2023Article
- COVID-19's impact on care practice for alpha-1-antitrypsin deficiency patients.BMC health services research · 2023Article
- Global Regulatory and Public Health Initiatives to Advance Pediatric Drug Development for Rare Diseases.Therapeutic innovation & regulatory science · 2022Review
- Fatigue and activity management education for individuals with systemic sclerosis: Adaptation and feasibility study of an intervention for a rare disease.Musculoskeletal care · 2022Article
- The COVID-19 Pandemic as an Impulse for the Development of Telemedicine in Primary Care in Poland.Journal of personalized medicine · 2022Article
- Impact of the COVID-19 pandemic on medical genetics and genomics training: Perspective from clinical trainees.American journal of medical genetics. Part A · 2022Article
- Discovering potential interactions between rare diseases and COVID-19 by combining mechanistic models of viral infection with statistical modeling.Human molecular genetics · 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
3 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The ongoing coronavirus disease 2019 (COVID-19) pandemic has disrupted every aspect of our life. The need to provide high-level care for an enormous number of patients with COVID-19 infection during this pandemic has impacted resourcing for and restricted the routine care of all non-COVID-19 conditions. Since the beginning of the pandemic, the people living with rare disorders, who represent a marginalized group of the population even in a normal world, have not received enough attention that they deserve. Due to the pandemic situation, they have experienced (and experiencing) an extreme inadequacy of regular clinical services, counseling, and therapies they need, which have made their life more vulnerable and feel more marginalized. Besides, the clinicians, researchers, and scientists working on rare genetic diseases face extra challenges due to the pandemic. Many ongoing research projects and clinical trials for rare and genetic diseases were stalled to avoid patients' and research staff's transmission to COVID-19. Still, with all the odds, telehealth and virtual consultations for rare disease patients have shown hope. The clinical, organizational, and economic challenges faced by institutions, patients, their families, and the caregivers during the pandemic indicate the importance of ensuring continuity of care in managing rare diseases, including adequate diagnostics and priority management strategies for emergencies. In this review, we endeavored to shed light on the issues the rare disease community faces during the pandemic and the adaptations that could help the rare disease community to better sustain in the coming days.
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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.