GuidelineJournal of pediatric gastroenterology and nutrition2013
Assessment and management of nutrition and growth in Rett syndrome.
Guideline in Journal of pediatric gastroenterology and nutrition, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT00299312 (Rett Syndrome Natural History), which is not on this map. Cited by 33 papers, 3 of them syntheses that pooled 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.
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.
Rett Syndrome Natural History: Genetic and Physical Characteristics of Rett Syndrome
Who cites it
33 citing papers in PubMed, 3 syntheses or guidelines pooled it, 64 citations in OpenAlex.
- Oral Manifestations of Rett Syndrome-A Systematic Review.International journal of environmental research and public health · 2021Pooled it
- Revised consensus statement on the preventive and symptomatic care of patients with leukodystrophies.Molecular genetics and metabolism · 2017Guideline
- Clinical Guidelines for Management of Bone Health in Rett Syndrome Based on Expert Consensus and Available Evidence.PloS one · 2016Pooled it
- Pubertal development in Rett syndrome deviates from typical females.Pediatric neurology · 2014Trial
- Utilization of Non-pharmacological Interventions in Rett Syndrome: A Systematic Review of the Literature on Supportive Care Management.Neurology and therapy · 2026Review
- Adams-Oliver Syndrome: A Comprehensive Literature Review of Clinical, Nutritional, Genetic, and Molecular Aspects with Nursing Care Considerations.International journal of molecular sciences · 2025Review
- SmartBerry for AI-based growth stage classification and precision nutrition management in strawberry cultivation.Scientific reports · 2025Article
- Review of a specialist Rett syndrome clinic from 2003 to the COVID pandemic: clinic experience and carer perspectives.Orphanet journal of rare diseases · 2024Article
- Rett syndrome.Nature reviews. Disease primers · 2024Review
- The Efficacy of a Human-Ready miniGenes · 2023Article
- A Severity Comparison between Italian and Israeli Rett Syndrome Cohorts.Diagnostics (Basel, Switzerland) · 2023Article
- Review
- Diet and Nutritional Status of Polish Girls with Rett Syndrome-A Case-Control Study.Nutrients · 2023Article
- Rett Syndrome: A Tale of Altered Genetics, Synaptic Plasticity, and Neurodevelopmental Dynamics.Cureus · 2023Review
- Impact of Genetic and Genomic Testing on the Clinical Management of Patients with Autism Spectrum Disorder.Genes · 2022Review
- Improving clinical trial readiness to accelerate development of new therapeutics for Rett syndrome.Orphanet journal of rare diseases · 2022Review
- Clinical presentation of Rett syndrome in relation to quality of life and family functioning.The Journal of international medical research · 2021Article
- Consensus guidelines on managing Rett syndrome across the lifespan.BMJ paediatrics open · 2020Article
- Oral health experiences of individuals with Rett syndrome: a retrospective study.BMC oral health · 2018Article
- The course of awake breathing disturbances across the lifespan in Rett syndrome.Brain & development · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
13 authors at 8 institutions in 2 countries.
Funding
Abstract
objectivesWe developed recommendations for the clinical management of poor growth and weight gain in Rett syndrome through evidence review and the consensus of an expert panel of clinicians.
methodsInitial draft recommendations were created based upon literature review and 34 open-ended questions in which the literature was lacking. Statements and questions were made available to an international, multidisciplinary panel of clinicians in an online format and a Microsoft Word-formatted version of the draft via e-mail. Input was sought using a 2-stage modified Delphi process to reach consensus. Items included clinical assessment of growth, anthropometry, feeding difficulties and management to increase energy intake, decrease feeding difficulties, and consideration of gastrostomy.
resultsAgreement was achieved on 101 of 112 statements. A comprehensive approach to the management of poor growth in Rett syndrome is recommended that takes into account factors such as feeding difficulties and nutritional needs. A body mass index of approximately the 25th centile can be considered as a reasonable target in clinical practice. Gastrostomy is indicated for extremely poor growth, if there is risk of aspiration and if feeding times are prolonged.
conclusionsThese evidence- and consensus-based recommendations have the potential to improve care of nutrition and growth in a rare condition and stimulate research to improve the present limited evidence base.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
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 OpenQuestion graph.