AIMC Topic: Rare Diseases

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Enhancing rare disease detection with deep phenotyping from EHR narratives: evaluation on Jeune syndrome.

International journal of medical informatics
BACKGROUND: Patients with rare diseases frequently experience misdiagnoses and long diagnostic delays. Accelerating their diagnosis is essential to ensure timely access to appropriate care. Given the increasing availability of EHRs, combining artific...

Artificial intelligence and perspective for rare genetic kidney diseases.

Kidney international
The integration of big data and artificial intelligence (AI) has revolutionized biomedicine, enhancing our understanding of diseases and health care practices. Although AI has shown remarkable success in some medical fields, its application in nephro...

Ontology accelerates few-shot learning capability of large language model: A study in extraction of drug efficacy in a rare pediatric epilepsy.

International journal of medical informatics
OBJECTIVE: Dravet Syndrome (DS) is a developmental and epileptic encephalopathy that is characterized by severe, prolonged motor seizures and high resistance to multiple antiseizure medications (ASMs) with multiple comorbidities. Evaluating the effic...

Applying artificial intelligence to rare diseases: a literature review highlighting lessons from Fabry disease.

Orphanet journal of rare diseases
BACKGROUND: Use of artificial intelligence (AI) in rare diseases has grown rapidly in recent years. In this review we have outlined the most common machine-learning and deep-learning methods currently being used to classify and analyse large amounts ...

Risks and benefits of ChatGPT in informing patients and families with rare kidney diseases: an explorative assessment by the European Rare Kidney Disease Reference Network (ERKNet).

Pediatric nephrology (Berlin, Germany)
BACKGROUND: Rare diseases affect fewer than 1 in 2000 individuals, but approximately 150 rare kidney diseases account for about 10% of the chronic kidney disease (CKD) population, impacting millions across Europe and globally. The scarcity of medical...

Designing Clinical Trials for Patients With Rare Cancers: Connecting the Zebras.

American Society of Clinical Oncology educational book. American Society of Clinical Oncology. Annual Meeting
The field of rare cancer research is rapidly transforming, marked by significant progress in clinical trials and treatment strategies. Rare cancers, as defined by the National Cancer Institute, occur in fewer than 150 cases per million people each ye...

Human Phenotype Ontology Annotations for Rare Congenital Conditions: Application to Arthrogryposis Multiplex Congenita.

American journal of medical genetics. Part A
Arthrogryposis multiplex congenita (AMC) represents a large, rare group of congenital conditions. This study addressed major challenges in AMC research posed by the lack of systematic frameworks for data collection and the use of inconsistent termino...

A labeled medical records corpus for the timely detection of rare diseases using machine learning approaches.

Scientific reports
Rare diseases (RDs) are a group of pathologies that individually affect less than 1 in 2000 people but collectively impact around 7% of the world's population. Most of them affect children, are chronic and progressive, and have no specific treatment....

An ontology-based rare disease common data model harmonising international registries, FHIR, and Phenopackets.

Scientific data
Although rare diseases (RDs) affect over 260 million individuals worldwide, low data quality and scarcity challenge effective care and research. This work aims to harmonise the Common Data Set by European Rare Disease Registry Infrastructure, Health ...

Ontology-based expansion of virtual gene panels to improve diagnostic efficiency for rare genetic diseases.

BMC medical informatics and decision making
BACKGROUND: Virtual Gene Panels (VGP) comprising disease-associated causal genes are utilized in the diagnosis of rare genetic diseases to evaluate candidate genes identified by whole-genome and whole-exome sequencing. VGPs generated by the PanelApp ...