ArticleJournal of biosciences2023
A survey of awareness of diagnosis and treatment of rare diseases among healthcare professionals and researchers in India.
Article in Journal of biosciences, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
What it found
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The trial behind it
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Who cites it
10 citing papers in PubMed, 10 citations in OpenAlex.
- Rare diseases in Brazil: a nationwide analysis of the diagnostic odyssey.Journal of community genetics · 2026Article
- Spinal muscular atrophy in India: Patient journey, access to care, treatment barriers, and strategic recommendations: Insights from experts.Journal of neuromuscular diseases · 2026Review
- Main Recommendations for Developing Education and Awareness Strategies for Rare Diseases: Scoping Review.JMIR medical education · 2026Article
- Awareness and knowledge gaps about pediatric rare disease among anesthesia practitioners in China: a survey-based study.BMC pediatrics · 2026Article
- Mapping the rare disease stakeholders in India.PLOS global public health · 2026Article
- Identifying key factors for recurrence of genetic disorder: insights from Indian families with multiple affected children.Journal of community genetics · 2025Article
- Hospital administrators as forgotten partners in rare disease care: a call to action by the international hospital federation's global rare pediatric disease network.Orphanet journal of rare diseases · 2024Article
- Navigating health policies and programs in India: exploring opportunities to improve rare disease management and orphan drug research.Orphanet journal of rare diseases · 2024Review
- Recent developments in gene therapy research in India.Journal of biosciences · 2024Review
- Orphan drug development: Challenges, regulation, and success stories.Journal of biosciences · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 4 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Rare diseases (RDs) are those that affect a small fraction of the total population. In India, where resources are scarce, the healthcare infrastructure and policy framework are focused on mitigating diseases that affect a large number of people. As a result,many cases ofRDs remain unreported, undiagnosed, and untreated. To understandthe currentlevel of RD awareness among healthcare professionals (HCPs) and researchers, as they are key stakeholders in diagnosis, treatment, policy making, and drug development, we conducted a survey based on identification of an RD, time for diagnosis, treatment options, and relationship with family history and geographic location. The survey was divided into two parts, one for researchers and the other for healthcare professionals, each consisting of 22 questions. We observed that among all our respondents, 31% of researchers and 29% of HCPs did not know the time required for diagnosis of a rare disease they mentioned in the survey. They identified the importance of family history but failed to realize its association with geographic location. The results from the exploratory study can provide information for enabling larger studies to develop recommendations and policies that can improve awareness about RDs in healthcare communities.
Indexed as
Identifiers
37795705W4387106284What 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.