Evidence map›Paper›PMID 42110436›Full record

ReviewFrontiers in medicine2026

TeloNet is born: why all specialities need to be aware of telomere biology disorders.

Hilary J Longhurst, Jane K Paxton, Hemanth Tummala, Duncan M Baird, Josu de la Fuente, Austin G Kulasekararaj, Guruprasad P Aithal, Jennifer A Dickens, Pilar Rivera-Ortega, Ramsay Bowden and 3 more

Abstract readReview
In one paragraph

Review in Frontiers in medicine, 2026. 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

13 authors.

Hilary J LonghurstDyskeratosis Congenita Action (DC Action), London, United Kingdom.
Jane K PaxtonDyskeratosis Congenita Action (DC Action), London, United Kingdom.
Hemanth TummalaCentre for Genomics and Child Health, Blizard Institute, Faculty of Medicine and Dentistry, Queen Mary University of London, London, United Kingdom.
Duncan M BairdDivision of Cancer and Genetics, Cardiff University, Cardiff, United Kingdom.
Josu de la FuenteDepartment of Paediatric Haematology, Imperial College London, London, United Kingdom.
Austin G KulasekararajDepartment of Haematology, King's College Hospital, Denmark Hill, London, United Kingdom.
Guruprasad P AithalNIHR Nottingham Biomedical Research Centre, Nottingham University Hospitals NHS Trust and the University of Nottingham, Nottingham, United Kingdom.
Jennifer A DickensDepartment of Medicine, Cambridge Institute for Medical Research, University of Cambridge, Cambridge, United Kingdom.
Pilar Rivera-OrtegaDepartment of Respiratory Medicine, Royal Devon and Exeter Hospital, Exeter, United Kingdom.
Ramsay BowdenDepartment of Genomic Medicine, University of Cambridge, Cambridge, United Kingdom.
Joanna LargeDepartment of Haematology, Kings College Hospital, London, United Kingdom.
Inderjeet DokalCentre for Genomics and Child Health Blizard Institute, Queen Mary University of London, London, United Kingdom.
TeloNet Group

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Telomere biology disorders (TBDs) and short telomere syndromes are difficult to diagnose, requiring a combination of clinical acumen, gene variant analysis and ideally, telomere length. Severe phenotypes include the ultra-rare dyskeratosis congenita and related early-onset syndromes. More commonly, TBDs can present in adulthood with single- or multi-system fibrotic disease, apoptotic bone marrow failure or malignancy. In the general population, shorter telomere lengths are associated with chronic inflammation, fibrotic disorders, cardiovascular disease, malignancy and disorders of ageing. Diagnosis and expert multisystem care are important; TBD-related conditions require non-standard treatments, minimising immunosuppression and potentially profibrotic treatments. All too aware of the challenges TBD patients face and the urgent need for coordinated care, the patients group DC Action brought together patients, medical professionals and scientists: the "TeloNet" alliance, to share best practice and develop diagnostic and management pathways. This mini review describes the first TeloNet meeting, summarising current United Kingdom (UK) practice, in the context of global provision, drawing attention to challenges and improvements required for timely diagnosis, coordinated monitoring and care for people living with TBDs. TeloNet is UK-focussed but the challenges described have relevance across disparate nations and healthcare systems. Those with an interest in TBDs are invited to join TeloNet by contacting info@dcaction.org.

Indexed as

bone marrow failurecirrhosis and portal hypertensiondyskeratosis congenitainterstitial lung diseasemultidisciplinary carepulmonary fibrosis (MeSH)telomere biology disordertelomere - genetics

Identifiers

PMID42110436
PMCPMC13154602

What Socratic holds

Textmetadata
LicenceCC BY
Read underepoch 390

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 Socratic graph.