bims-curels Biomed News
on Leigh syndrome
Issue of 2026–01–18
eight papers selected by
Cure Mito Foundation



  1. J Inherit Metab Dis. 2026 Jan;49(1): e70142
      The deficiency of mitochondrial complex I (CI), a key regulator of cellular energy homeostasis and metabolic flexibility, is a prevalent driver of cardiovascular pathology in mitochondrial disorders. The Ndufs4 knockout (KO) mouse model of Leigh syndrome (LS), which lacks a critical CI subunit, exhibits severe cardiac abnormalities secondary to encephalomyopathy. However, the metabolic basis of LS-associated cardiac dysfunction remains poorly understood. This study aims to evaluate how whole-body CI deficiency affects cardiac bioenergetics and metabolism in late-stage Ndufs4 KO mice. We assessed respiratory chain enzyme activities and oxygen consumption rates using kinetic spectrophotometric assays and high-resolution respirometry, respectively, in mitochondria isolated from Ndufs4 KO and wild-type mouse hearts. Cardiometabolic profiling was performed on a well-powered cohort, employing untargeted GC-TOFMS, 1H-NMR and semi-targeted LC-MS/MS. Ndufs4 KO hearts showed a 98.9% reduction in CI activity and a 63.9% decline in CI-driven respiration, halving CI's contribution to combined CI + II respiration and prompting a shift toward CII-driven respiration. Cardiometabolic profiles revealed significant reductions in energy-generating substrates, including long-chain fatty acids, glucose, lactic acid and 3-hydroxybutyric acid, along with lower levels of anaplerotic amino acids and TCA cycle intermediates, particularly succinic acid. Additionally, profound disruptions were observed in dimethylglycine, glutamic acid and lysine metabolism. We conclude that whole-body CI deficiency results in severe cardiac bioenergetic and metabolic dysregulation, characterised by reduced CI-dependent respiration and extensive substrate reduction across multiple metabolic pathways. These findings underscore the metabolic vulnerability of the CI-deficient heart and suggest potential therapeutic targets for managing cardiomyopathy in mitochondrial disease.
    Keywords:  Leigh syndrome; Ndufs4 knockout mice; complex I deficiency; heart metabolism
    DOI:  https://doi.org/10.1002/jimd.70142
  2. Hum Reprod. 2026 Jan 13. pii: deaf247. [Epub ahead of print]
      Over a number of years, there has been growing interest in the introduction of more invasive ARTs, such as nuclear transfer, otherwise referred to as mitochondrial donation, and mitochondrial supplementation/transfer into clinical medicine. They have been proposed to overcome repeated failed fertilization or developmental arrest or to prevent carriers of mitochondrial DNA disease from having affected children. These technologies require considerable manipulation of the oocyte, which can affect its epigenetic programming that was established as it grew and developed into a fertilizable oocyte. Consequently, when a nucleus is transferred into an enucleated oocyte or pronuclei are transferred into an enucleated zygote, the nucleus must adapt to its new cytoplasmic environment in readiness for the waves of DNA demethylation and methylation that take place during preimplantation development. As a result, some key developmental gene networks are affected. Additionally, these approaches also affect patterns of mitochondrial DNA inheritance, with some embryos and offspring possessing mitochondrial DNA carried over into the oocyte with the nucleus, as well as the mitochondrial DNA from the donor oocyte. Similar outcomes result from the addition of extra mitochondrial DNA into oocytes through mitochondrial supplementation. We provide a background as to how these technologies evolved and discuss recent outcomes associated with clinical work so far undertaken within these approaches and their consequences for the offspring. We conclude that these technologies are not simply replacing or replenishing defective ooplasms with new or extra mitochondria but rather induce a series of genomic and epigenomic events that we do not yet fully understand. To our minds, these issues should be first addressed before clinical trials are continued.
    Keywords:  embryo; metaphase II spindle transfer; mitochondrial DNA; mitochondrial donation; mitochondrial supplementation; mtDNA; nuclear transfer; oocyte; pronuclear transfer
    DOI:  https://doi.org/10.1093/humrep/deaf247
  3. Res Involv Engagem. 2026 Jan 12. 12(1): 4
      
    Keywords:  Health research; Patient advocate; Patient engagement; Patient oriented research; Patient partners; Searchability
    DOI:  https://doi.org/10.1186/s40900-025-00817-w
  4. Fam Pract. 2025 Dec 09. pii: cmaf113. [Epub ahead of print]43(1):
       BACKGROUND: Since patients increasingly have online access to their diagnostic test results, general practitioners (GPs) have reduced control over how this information is communicated. This shift introduces new challenges in communication and interaction with patients and requires a better understanding of how GPs experience and manage communication in an evolving digital healthcare landscape.
    OBJECTIVES: To explore GPs' experiences and perceived challenges in communicating information about diagnostic test results to patients in the context of increasing digital accessibility.
    METHODS: In 2024, we conducted a qualitative study using semi-structured interviews with purposively sampled Dutch GPs in the Netherlands. Interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis. Key themes reflecting experiences and challenges related to the communication of diagnostic test results were identified.
    RESULTS: Eighteen participants were interviewed in the study. Three overarching themes emerged from the data: (i) managing patient expectations; (ii) purpose-driven communication strategies; and (iii) balancing efficiency and patient engagement in communicating test results.
    CONCLUSIONS: GPs considered patients' online access to diagnostic test results a double-edged sword-while it may support more efficiency in the healthcare process, it also introduces communication challenges, particularly due to patients' misinterpretation of clinically insignificant findings and the use of medical jargon in reports. These findings highlight the need for tailored communication strategies and improvement of information provided in online patient portals.
    Keywords:  electronic health records; general practice; general practitioners; health communication; patient access to records; patient portal
    DOI:  https://doi.org/10.1093/fampra/cmaf113
  5. Neurology. 2026 Feb 10. 106(3): e214610
      The recent rapid rise in the number of identified genetic disorders that are potentially treatable has far outpaced the development of treatments, resulting in a worsening bottleneck in the translational pipeline. New therapeutics that target an individual's specific genetic variant, or "personalized" therapeutics, are being developed and tested at several academic medical centers. Personalized therapeutics represent a potentially transformative platform technology that could unlock new treatment models for rare disorders. At the same time, the field remains investigational, and developing and testing novel drugs in single individuals, particularly children, poses substantial sensitivities and challenges. In this review, we outline some important considerations for academic medical centers in determining their role in reviewing and supporting the development of personalized therapeutics for rare disorders, including oversight and resource allocation. We describe an institutional infrastructure and process for navigating this landscape, involving transparent oversight and communication processes.
    DOI:  https://doi.org/10.1212/WNL.0000000000214610
  6. Br J Dermatol. 2026 Jan 13. pii: ljag019. [Epub ahead of print]
      
    DOI:  https://doi.org/10.1093/bjd/ljag019
  7. J Clin Transl Sci. 2025 ;9(1): e265
      Research participants should be informed of genetic test results that could impact their health, particularly when they have expressed interest in receiving such information. Furthermore, the return of genetic test results is essential to improve trust, transparency, and health equity. However, investigators often encounter barriers in returning genetic test results to research participants. We examined genomic research at a large, research-intensive medical school and found less than 6% of protocols included plans to return results to participants. This study describes our development of protocols for returning primary and secondary genetic test results and implementation of a Genomic Return of Results (gROR) service. This arose through a collaboration with experts in community engagement, genetics, and pathology to consider consent adequacy, analytical/clinical validity, and clinical utility when returning results. The gROR service reduces investigator burden and provides participants with genetic information and guidance to address any potential health risks. Genetic results are returned by a genetic counselor at no cost to participants or their family. Investigator costs are subsidized to incentivize the delivery of actionable genetic test results to research participants. Our approach prioritizes transparency, accessibility, and informed decision-making, thereby promoting equitable sharing of genetic knowledge and personalized healthcare interventions.
    Keywords:  Return of results; genetics; genomics; research participants; service
    DOI:  https://doi.org/10.1017/cts.2025.10197
  8. Postgrad Med J. 2026 Jan 10. pii: qgaf191. [Epub ahead of print]
      The concept of rare disease, formalized in the United States in the 1980s with the Orphan Drug Act, has historical and cultural roots dating back to the Renaissance. The definition of "rarity" has changed over time according to diagnostic tools, social contexts, and economic factors. With the advent of genetics, many new low-prevalence diseases have emerged, raising clinical and ethical challenges. Today, rare diseases require a multidisciplinary approach that also includes narrative medicine, in order to value the patient's experience and better understand the relationship between disease, illness, and society.
    Keywords:  medical education & training; medical history
    DOI:  https://doi.org/10.1093/postmj/qgaf191