Evidence map›Paper›PMID 41345659›Full record

ReviewOrphanet journal of rare diseases2025

Overview of pediatric and adult lysosomal acid lipase deficiency: expert recommendations from a Gulf cooperation council working group.

Moeenaldeen AlSayed, Khalid Al Rasadi, Noura S AlDhaheri, Abdulrahman Al-Hussaini, Ali Awaji, Amal Al Tenaiji, Khalid Ibrahim Bzeizi, Mohamad Miqdady, Nadia Al Hashmi, Majid Alfadhel

Abstract readReview
In one paragraph

Review in Orphanet journal of rare diseases, 2025. 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

10 authors.

Moeenaldeen AlSayedDepartment of Medical Genomics, King Faisal Specialist Hospital and Research Centre, Riyadh, Kingdom of Saudi Arabia.
Khalid Al RasadiDepartment of Biochemistry, College of Medicine and Health Sciences, Sultan Qaboos University, Muscat, Oman.
Noura S AlDhaheriDepartment of Genetics and Genomics, College of Medicine and Health Sciences, United Arab Emirates University, Al Ain, United Arab Emirates.
Abdulrahman Al-HussainiFaculty of Medicine, Alfaisal University, Riyadh, Kingdom of Saudi Arabia.
Ali AwajiGenetic Center, Prince Mohammed Ben Naser Hospital, Jazan, Kingdom of Saudi Arabia.
Amal Al TenaijiSheikh Khalifa Medical City, Abu Dhabi, United Arab Emirates.
Khalid Ibrahim BzeiziDepartment of Liver Transplantation, King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia.
Mohamad MiqdadySheikh Khalifa Medical City, Abu Dhabi, United Arab Emirates.
Nadia Al HashmiNational Genetic Center, and Department of Pediatrics, Royal Hospital, Muscat, Oman.
Majid AlfadhelGenetic and Precision Medicine Department, King Abdullah Specialized Children Hospital, King Abdulaziz Medical City, Ministry of National Guard Health Affairs (MNGHA), Riyadh, Saudi Arabia. dralfadhelm@gmail.com.ORCID http://orcid.org/0000-0002-9427-7240

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundLysosomal acid lipase deficiency (LAL-D) is an autosomal recessive ultrarare lysosomal storage disease caused by pathogenic/likely pathogenic variants in the LIPA gene. The age of onset and progression rate can significantly vary, possibly due to the nature of the underlying variants. The disorder is often misdiagnosed or undiagnosed in the Gulf Cooperation Council (GCC) countries owing to its nonspecific clinical presentation; this necessitates establishing campaigns to increase awareness among healthcare professionals and strategies for identifying and screening high-risk populations. This narrative review is based on an analysis of the available literature, complemented by key discussions among a group of recognized healthcare professionals from the GCC region with expertise in clinical genetics, hepatology, gastroenterology, and lipidology. The outcome of their discussions is a set of practical recommendations and insights aimed at assisting physicians across multiple specialties in the identification and management of individuals affected by this ultrarare genetic disorder.

conclusionLAL-D presents significant diagnostic and management challenges, particularly within the GCC region, owing to its rarity, limited awareness, and insufficient utilization of genetic testing. The prevalence and distribution of genetic variations associated with LAL-D remain inadequately explored in this population. The development of standardized regional guidelines is essential to harmonize diagnostic and management practices. Continued research efforts focusing on the genetic landscape of LAL-D in the GCC are imperative to bridge knowledge gaps and enhance clinical outcomes for affected patients.

Indexed as

Wolman DiseaseAdultChildGenetic TestingHumansSterol EsteraseSterol EsteraseCholesteryl ester storage diseaseDyslipidemiaHepatomegalyInfantile lysosomal acid lipase deficiencyLysosomal acid lipase deficiencyLysosomal storage diseaseWolman disease

Identifiers

PMID41345659
PMCPMC12797348

What Socratic holds

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LicenceCC BY
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Registered trials

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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 Socratic graph.