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What's new in your rare disease | Kisho

Not rare diseases news,
news about your rare disease.

Every story we pull is tagged to the disease it’s about — so you can filter to your condition and read only what matters.

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mycosis fungoides mycosis fungoides variant+1 moreResearch

A registry-based study analyzed real-world outcomes for 25,467 patients with mycosis fungoides, providing valuable insights into site-specific nodal involvement. This research contributes to understanding the disease's progression and treatment responses.

real world outcomes of mycosis fungoides and site specific nodal involvement a registry based study of 25 467 patients

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Real-World Outcomes of Mycosis Fungoides and Site-Specific Nodal Involvement: A Registry-Based Study of 25 467 Patients.”

Research

A systematic review and meta-analysis on pediatric thyroid eye disease provides insights into its management and clinical presentation. This research highlights the need for tailored approaches in treating this rare condition in children.

management and presentation of pediatric thyroid eye disease a systematic review and meta analysis

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Management and presentation of pediatric thyroid eye disease: A systematic review and meta-analysis.”

rhabdomyosarcomaResearch

A report highlights the diagnostic challenges associated with primary prostatic alveolar rhabdomyosarcoma in adults, emphasizing its rarity. This case study contributes to the understanding of this uncommon tumor type.

primary prostatic alveolar rhabdomyosarcoma in adult a diagnostic pitfall report of an extremely rare tumor

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Primary Prostatic Alveolar Rhabdomyosarcoma in Adult, a Diagnostic Pitfall: Report of an Extremely Rare Tumor.”

Research

A systematic review highlights the application of natural language processing and large language models in analyzing clinical notes for phenotyping and diagnosing rare diseases. This research could enhance diagnostic accuracy and patient outcomes in rare disease management.

applying natural language processing and large language models to clinical notes for phenotyping and diagnosing rare diseases a systematic review

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Applying natural language processing and large language models to clinical notes for phenotyping and diagnosing rare diseases: a systematic review.”

recurrent respiratory papillomatosisResearch

Researchers have developed a new prognostic assessment tool for recurrent respiratory papillomatosis, aiming to improve patient outcomes. This tool could enhance the understanding of disease progression and treatment efficacy.

development of a novel prognostic assessment tool for recurrent respiratory papillomatosis

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Development of a novel prognostic assessment tool for recurrent respiratory papillomatosis.”

Research

A new study explores genetic and molecular factors that contribute to human longevity and the mechanisms of epigenetic aging. This research could provide insights into aging-related diseases and potential therapeutic targets.

genetic and molecular factors underlying human longevity and epigenetic aging

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Genetic and molecular factors underlying human longevity and epigenetic aging.”

Research

AIM's Fair Pricing Model offers a framework for balancing innovation in drug development with equitable access for patients. The model's current and future applications aim to address pricing challenges in the rare disease sector.

balancing innovation and access insights from aim s fair pricing model and its current and future applications

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Balancing Innovation and Access: Insights from AIM's Fair Pricing Model and Its Current and Future Applications.”

paracoccidioidomycosis oral cavity squamous cell carcinoma+1 moreResearch

A report details two rare cases of synchronous mucocutaneous paracoccidioidomycosis and oral squamous cell carcinoma, highlighting the complexities of diagnosing and treating these co-occurring conditions. This study contributes to the understanding of the relationship between fungal infections and cancer.

synchronous mucocutaneous paracoccidioidomycosis and oral squamous cell carcinoma report of two rare cases

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Synchronous Mucocutaneous Paracoccidioidomycosis and Oral Squamous Cell Carcinoma: Report of Two Rare Cases.”

cold agglutinin diseaseResearch

A real-world study evaluates the safety and effectiveness of sutimlimab in patients with cold agglutinin disease, providing valuable insights into its clinical application. This research contributes to the understanding of treatment options for this rare condition.

safety and effectiveness of sutimlimab in cold agglutinin disease a real world international experience

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Safety and Effectiveness of Sutimlimab in Cold Agglutinin Disease: A Real-World International Experience.”

sarcoma sarcoma G1+1 moreResearch

A recent study highlights the challenges of recurrent radiation-associated sarcoma of the vulva, emphasizing its aggressive nature and treatment difficulties. This research contributes to the understanding of post-radiation complications in cancer survivors.

unforgiving sequela recurrent radiation associated sarcoma of the vulva

PubMed Rare Disease·7 months ago·Read at source →

Original title: “An unforgiving sequela: recurrent radiation-associated sarcoma of the vulva.”

coronary vasospasm myocardial infarction+1 moreResearch

A recent study highlights the occurrence of coronary vasospasm and myopericarditis as complications during immune checkpoint inhibitor therapy, presenting as ST-segment elevation myocardial infarction. This discovery underscores the need for awareness of cardiovascular risks in patients undergoing such treatments.

coronary vasospasm and myopericarditis presenting as st segment elevation myocardial infarction during immune checkpoint inhibitor therapy

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Coronary Vasospasm and Myopericarditis Presenting as ST-Segment Elevation Myocardial Infarction During Immune Checkpoint Inhibitor Therapy.”

pneumonia anaerobic pneumonia+1 moreResearch

A case study highlights pneumonia caused by Mycobacterium shimoidei, a rare non-tuberculous mycobacterial infection, in a young patient with anorexia nervosa. This discovery adds to the understanding of rare infections and their implications in vulnerable populations.

pneumonia due to mycobacterium shimoidei a rare non tuberculous mycobacterial infection in a young patient with anorexia nervosa

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Pneumonia due to Mycobacterium shimoidei: a rare non-tuberculous mycobacterial infection in a young patient with anorexia nervosa.”

amyloidosisResearch

A study published on PubMed details systemic apolipoprotein C-III amyloidosis in an Asian lion, Panthera leo persica. This research contributes to the understanding of amyloidosis in non-human species.

systemic apolipoprotein c iii amyloidosis in an asian lion panthera leo persica

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Systemic apolipoprotein C-III amyloidosis in an Asian lion (Panthera leo persica).”

Research

A recent study utilized artificial intelligence to identify patient-reported outcome and experience measures in oncology, leveraging data from ClinicalTrials.gov. This research highlights the potential of AI in enhancing patient engagement and data collection in clinical trials.

artificial intelligence for identifying patient reported outcome and experience measures in oncology retrospective cross sectional study using clinicaltrials gov

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Artificial Intelligence for Identifying Patient-Reported Outcome and Experience Measures in Oncology: Retrospective Cross-Sectional Study Using ClinicalTrials.gov.”

chronic recurrent multifocal osteomyelitisResearch

A multicenter study evaluates the effectiveness of the new EULAR/ACR classification criteria for pediatric chronic nonbacterial osteomyelitis. The findings contribute to understanding the diagnostic framework for this rare condition.

how well do the new eular acr classification criteria capture pediatric chronic nonbacterial osteomyelitis a multicenter pediatric cohort study

PubMed Rare Disease·7 months ago·Read at source →

Original title: “How Well Do the New EULAR/ACR Classification Criteria Capture Pediatric Chronic Nonbacterial Osteomyelitis? A Multicenter Pediatric Cohort Study.”

platelet-type bleeding disorder 16Research

Recent research provides insights into rare bleeding disorders and those of unknown cause, highlighting advancements in understanding their pathophysiology and potential therapeutic approaches. This review emphasizes the need for continued investigation to improve patient outcomes.

rare bleeding disorders and bleeding disorder of unknown cause current understanding and recent developments

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Rare Bleeding Disorders and Bleeding Disorder of Unknown Cause: Current Understanding and Recent Developments.”

X-linked cerebral adrenoleukodystrophy adrenoleukodystrophyResearch

A recent study published in PubMed explores the phenotypes and genetic variants associated with pediatric X-linked adrenoleukodystrophy, along with outcomes from hematopoietic stem cell transplantation (HSCT). This research provides valuable insights into the disease's variability and treatment efficacy.

pediatric x linked adrenoleukodystrophy phenotypes variants and hsct outcomes

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Pediatric X-linked adrenoleukodystrophy: phenotypes, variants, and HSCT outcomes.”

Research

A systematic review and meta-analysis reveals the prevalence of incidental findings requiring interventions in CT scans for trauma patients. This study highlights the need for awareness of such findings in emergency settings.

prevalence of incidental findings requiring interventions in ct for trauma patients in the emergency department a systematic review and meta analysis

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Prevalence of incidental findings requiring interventions in CT for trauma patients in the emergency department: a systematic review and meta-analysis.”

Research

New research identifies genetic modulators that influence disease penetrance, providing insights into how certain genetic factors can affect the severity and onset of rare diseases. This study could pave the way for personalized treatment approaches.

genetic modulators of disease penetrance

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Genetic Modulators of Disease Penetrance.”

Research

A recent study focuses on large-scale genetic analysis within the bleeding disorders community, aiming to enhance understanding and treatment options. This research could lead to significant advancements in the management of these conditions.

performing large scale genetic analysis in the bleeding disorders community

PubMed Rare Disease·7 months ago·Read at source →

Original title: “Performing Large-Scale Genetic Analysis in the Bleeding Disorders Community.”

Previous363 / 488Next

Daily Briefings

Not rare diseases news,news about your rare disease.

Earlier

A registry-based study analyzed real-world outcomes for 25,467 patients with mycosis fungoides, providing valuable insights into site-specific nodal involvement. This research contributes to understanding the disease's progression and treatment responses.

A systematic review and meta-analysis on pediatric thyroid eye disease provides insights into its management and clinical presentation. This research highlights the need for tailored approaches in treating this rare condition in children.

A report highlights the diagnostic challenges associated with primary prostatic alveolar rhabdomyosarcoma in adults, emphasizing its rarity. This case study contributes to the understanding of this uncommon tumor type.

A systematic review highlights the application of natural language processing and large language models in analyzing clinical notes for phenotyping and diagnosing rare diseases. This research could enhance diagnostic accuracy and patient outcomes in rare disease management.

Researchers have developed a new prognostic assessment tool for recurrent respiratory papillomatosis, aiming to improve patient outcomes. This tool could enhance the understanding of disease progression and treatment efficacy.

A new study explores genetic and molecular factors that contribute to human longevity and the mechanisms of epigenetic aging. This research could provide insights into aging-related diseases and potential therapeutic targets.

AIM's Fair Pricing Model offers a framework for balancing innovation in drug development with equitable access for patients. The model's current and future applications aim to address pricing challenges in the rare disease sector.

A real-world study evaluates the safety and effectiveness of sutimlimab in patients with cold agglutinin disease, providing valuable insights into its clinical application. This research contributes to the understanding of treatment options for this rare condition.

A recent study highlights the challenges of recurrent radiation-associated sarcoma of the vulva, emphasizing its aggressive nature and treatment difficulties. This research contributes to the understanding of post-radiation complications in cancer survivors.

A case study highlights pneumonia caused by Mycobacterium shimoidei, a rare non-tuberculous mycobacterial infection, in a young patient with anorexia nervosa. This discovery adds to the understanding of rare infections and their implications in vulnerable populations.

A study published on PubMed details systemic apolipoprotein C-III amyloidosis in an Asian lion, Panthera leo persica. This research contributes to the understanding of amyloidosis in non-human species.

A recent study utilized artificial intelligence to identify patient-reported outcome and experience measures in oncology, leveraging data from ClinicalTrials.gov. This research highlights the potential of AI in enhancing patient engagement and data collection in clinical trials.

A multicenter study evaluates the effectiveness of the new EULAR/ACR classification criteria for pediatric chronic nonbacterial osteomyelitis. The findings contribute to understanding the diagnostic framework for this rare condition.

Recent research provides insights into rare bleeding disorders and those of unknown cause, highlighting advancements in understanding their pathophysiology and potential therapeutic approaches. This review emphasizes the need for continued investigation to improve patient outcomes.

A systematic review and meta-analysis reveals the prevalence of incidental findings requiring interventions in CT scans for trauma patients. This study highlights the need for awareness of such findings in emergency settings.

New research identifies genetic modulators that influence disease penetrance, providing insights into how certain genetic factors can affect the severity and onset of rare diseases. This study could pave the way for personalized treatment approaches.

A recent study focuses on large-scale genetic analysis within the bleeding disorders community, aiming to enhance understanding and treatment options. This research could lead to significant advancements in the management of these conditions.

Not rare diseases news,
news about your rare disease.