The Standards of Care for Angelman Syndrome was published in 2022. This collaborative project documents common issues that accompany AS and the most common and established ways of providing care for the issues.   It covers paediatric and adult patients.

Note: Please note that it is based on the American healthcare system and some medications and services mentioned are not currently available in Australia.

• Clinical aspects of a large group of adults with Angelman syndrome – PubMed https://pubmed.ncbi.nlm.nih.gov/33108066/
• Angelman Syndrome in adolescents and adulthood – Angelman syndrome in adolescence and adulthood: A retrospective chart review of 53 cases – PubMed (nih.gov)

• Autism in Angelman syndrome: an exploration of comorbidity – PubMed https://pubmed.ncbi.nlm.nih.gov/15165432/

• Adaptive Behaviour Skills in Angelman Syndrome – https://www.findresources.co.uk/the-syndromes/angelman/adaptive-behaviour
• Sensory processing patterns in persons with Angelman syndrome – PubMed https://pubmed.ncbi.nlm.nih.gov/16915878/
• Refining the Behavioral Phenotype of Angelman Syndrome: Examining Differences in Motivation for Social Contact Between Genetic Subgroups – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7921159/pdf/fnbeh-15-618271.pdf
• The prevalence of aggression in genetic syndromes: a review – PubMed https://pubmed.ncbi.nlm.nih.gov/24594523/
• Anxiety-associated and separation distress-associated behaviours in Angelman syndrome – PubMed (nih.gov)
• Discrimination training reduces high rate social approach behaviors in Angelman syndrome: proof of principle – PubMed (nih.gov)
• Video Modelling – Imitation in Angelman syndrome: the role of social engagement (nature.com); Home | Anthea Naylor (videoselfmodelling.com)
• Positive Behaviour Supports – https://fb.watch/bKo_c8O6Xj/

Angelman syndrome communication overview

• https://angelmansyndromenews.com/comunication-difficulties-in-angelman-syndrome/
• Communication in Angelman syndrome: a scoping review (ern-ithaca.eu)
• Communication Strategies for Children with Angelman Syndrome – Consult QD (clevelandclinic.org)

The role of vision and behaviour – https://www.angelman.org/studies/vision-communication/

Gestures in Angelman syndrome

• Use of Enhanced Natural Gestures to Foster Interactions Between Children With Angelman Syndrome and Their Parents | American Journal of Speech-Language Pathology (asha.org)
• The development of gesture and prelinguistic communication in Angelman syndrome — Aston Research Explorer

Training series –  https://www.angelman.org/resources-education/communication-training-series/

Research in AS and communication – https://cureangelman.org/orca

• Emergency Care Hotline – a global 24-hour emergency and urgent care hotline will be available for provider-to-provider consultations to appropriately manage issues, particularly seizures, related to Angelman syndrome.

• Epilepsy in Angelman syndrome: A scoping review – PubMed https://pubmed.ncbi.nlm.nih.gov/32893075/

• Effect of epilepsy on autism symptoms in Angelman syndrome – PubMed https://pubmed.ncbi.nlm.nih.gov/29340132/

• Are Angelman and Prader‐Willi syndromes more similar than we thought? Food‐related behavior problems in Angelman, Cornelia de Lange, Fragile X, Prader‐Willi and 1p36 deletion syndromes – Welham – 2015 – American Journal of Medical Genetics Part A – Wiley Online Library https://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.36923

• Prevalence of gastrointestinal symptoms in Angelman syndrome – PubMed https://pubmed.ncbi.nlm.nih.gov/28816003/

• Angelman syndrome: A review highlighting musculoskeletal and anatomical aberrations – PubMed https://pubmed.ncbi.nlm.nih.gov/26480021/
• Dystonia in Angelman syndrome: a common, unrecognized clinical finding – PubMed https://pubmed.ncbi.nlm.nih.gov/33484323/

• Incontinence in persons with Angelman syndrome – PubMed https://pubmed.ncbi.nlm.nih.gov/28000035/
• Incontinence in individuals with Angelman syndrome: a comparative study – PubMed https://pubmed.ncbi.nlm.nih.gov/24076983/
• Timed Toileting – The effectiveness of different methods of toilet training for bowel and bladder control – The effectiveness of different methods of toilet training for bowel and bladder control. – AAHD

• Hyperactivity, Irritability and Outbursts in Children with Angelman Cause Stress for Parents, Study Finds  – https://angelmansyndromenews.com/news-posts/2019/05/17/hyperactivity-irritability-aggressiveness-common-children-angelman-syndrome/
• Parental and carer responses to Angelman syndrome and Prader-Willi syndrome – https://ro.ecu.edu.au/theses/434
• The Association of Challenging Behaviors in Children with Angelman Syndrome on Caregiver Anxiety, Stress, and Depression – PowerPoint Presentation (purdue.edu)
• Psychological well-being in parents of children with Angelman, Cornelia de Lange and Cri du Chat syndromes – PubMed (nih.gov)
• Mental Health and Well-Being in Mothers of Children With Rare Genetic Syndromes Showing Chronic Challenging Behavior: A Cross-Sectional and Longitudinal Study – PubMed (nih.gov)

• Sleep in Angelman syndrome: A review of evidence – PubMed https://pubmed.ncbi.nlm.nih.gov/28784434/
• Interventions to improve sleep for individuals with Angelman syndrome: A systematic review – PubMed https://pubmed.ncbi.nlm.nih.gov/31869773/
• Characterization of sleep habits and medication outcomes for sleep disturbance in children and adults with Angelman syndrome – PubMed https://pubmed.ncbi.nlm.nih.gov/32506735/
• Sleep in children and adolescents with Angelman syndrome: association with parent sleep and stress – PubMed https://pubmed.ncbi.nlm.nih.gov/22044653/
• Cerebra – Sleep: A Guide for Parents Sleep – Cerebra