Evidence map›Paper›PMID 40276110›Full record

ArticleConcilium (Glen Rock, N.J.)2024

Rare diseases, trends and challenges for scientific advances: a snapshot of a decade of research in Brazil.

Fábio de Oliveira Aquino, Ricardo Eccard da Silva, Maria Rita Carvalho Garbi Novaes

Abstract read
In one paragraph

Article in Concilium (Glen Rock, N.J.), 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

3 authors.

Fábio de Oliveira AquinoUniversidade de Brasília, Brasil.ORCID 0009-0001-3447-4541
Ricardo Eccard da SilvaAgência Nacional de Vigilância Sanitária, Brasil.ORCID 0000-0003-2322-7163
Maria Rita Carvalho Garbi NovaesUniversidade de Brasília, Brasil.ORCID 0000-0002-9366-6017

Funding

Training Program in Research Ethics in the AmericasR25TW001605 · FIC · YESHIVA UNIVERSITY · PI LUNA, FLORENCIA · 2000 to 2025
$6.7M
FIC NIH HHS R25 TW001605
6 · The paper itself

Abstract

Brazil is home to around 13 million rare disease patients, which represents a significant challenge for biomedical research and public health. This descriptive and exploratory study analyzed research protocols on rare diseases submitted to Plataforma Brasil between 2013 and 2023, with the aim of identifying trends, challenges and opportunities for scientific progress in this area. The research evaluated variables such as the number of studies submitted and approved, sample characteristics, type of study, experimental design, research phase, participation in international networks, and epidemiological data (ICD). The results indicate a substantial increase in the number of protocols submitted over the period analyzed, with an average approval rate of 87.26%. Most of the studies were conducted in public institutions, highlighting the fundamental role of the public sector in rare disease research in Brazil. These findings suggest a growing investment and interest in research in this area, which could boost the development of new therapies and interventions, as well as supporting the formulation of more effective public policies to meet the needs of patients with rare diseases.

Indexed as

Clinical TrialDatabasePublic PolicyRare Diseases

Identifiers

PMID40276110
PMCPMC12019882

What OpenQuestion holds

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Registered trials

None linked

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.