Multidisciplinary Standard of care
We support families and clinicians by providing clear information on multidisciplinary approaches and care pathways commonly used in Angelman syndrome.
A standard of care describes the commonly used approaches to supporting individuals living with a particular health condition. These are often well established for more common conditions. In contrast, Angelman syndrome is a rare condition, and formal guidance was not available until an international consensus was developed in 2022.
More than fifty clinicians and researchers with experience in Angelman syndrome contributed to this consensus. They summarised clinical features commonly described in the literature and drew on their collective experience to outline guidance frameworks and care considerations that may assist in supporting individuals with Angelman syndrome.
| Genetics | Developmental medicine | Psychology | General health |
| Neurology & movement disorders | Sleep | Psychiatry | Orthopaedics |
| Ophthalmology | Gastrointestinal health | Toileting | Early intervention & therapies |
| Communication | Transition from paediatric to adult services | Caregiver health | NDIS |
The multidisciplinary standard of care brings together published medical literature and the collective experience of clinicians involved in supporting individuals with Angelman syndrome. It provides an overview of considerations across different stages of life and is intended to assist families and clinicians in understanding the types of health needs that may arise over time.
For families, this information can help build awareness of common clinical themes described in Angelman syndrome at various ages.
For clinicians, the consensus document outlines areas of care that may be relevant to consider when supporting individuals living with Angelman syndrome, depending on their presentation and developmental stage.
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