Background A pattern of major and minor congenital anomalies, facial dysmorphic features, and neurodevelopmental difficulties, including cognitive and social impairments has been reported in some children exposed to sodium valproate (VPA) during pregnancy. Recognition of the increased risks of in utero exposure to VPA for congenital malformations, and for the neurodevelopmental effects in particular, has taken many years but these are now acknowledged following the publication of the outcomes of several prospective studies and registries. As with other teratogens, exposure to VPA can have variable effects, ranging from a characteristic pattern of major malformations and significant intellectual disability to the other end of the continuum, characterised by facial dysmorphism which is often difficult to discern and a more moderate effect on neurodevelopment and general health. It has become clear that some individuals with FVSD have complex needs requiring multidisciplinary care but information regarding management is currently lacking in the medical literature. Methods An expert group was convened by ERN-ITHACA, the European Reference Network for Congenital Malformations and Intellectual Disability comprised of professionals involved in the care of individuals with FVSD and with patient representation. Review of published and unpublished literature concerning management of FVSD was undertaken and the level of evidence from these sources graded. Management recommendations were made based on strength of evidence and consensus expert opinion, in the setting of an expert consensus meeting. These were then refined using an iterative process and wider consultation. Results Whilst there was strong evidence regarding the increase in risk for major congenital malformations and neurodevelopmental difficulties there was a lack of high level evidence in other areas and in particular in terms of optimal clinical management.. The expert consensus approach facilitated the formulation of management recommendations, based on literature evidence and best practice. The outcome of the review and group discussions leads us to propose the term Fetal Valproate Spectrum Disorder (FVSD) as we feel this better encompasses the broad range of effects seen following VPA exposure in utero. Conclusion The expert consensus approach can be used to define the best available clinical guidance for the diagnosis and management of rare disorders such as FVSD. FVSD can have medical, developmental and neuropsychological impacts with life-long consequences and affected individuals benefit from the input of a number of different health professionals. Electronic supplementary material The online version of this article (10.1186/s13023-019-1064-y) contains supplementary material, which is available to authorized users.

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Introduction/Background Many patients present to Paediatric Rheumatology clinic, (53%) with chronic pain related to Hypermobility. Pre-Covid, an evidenced based hypermobility class was developed and run by the Allied Health Professional team for children and young people (C & YP), and their parents/carers. These 6 classes were group-based and included education and exercise therapy but were stopped due to the pandemic. Feedback gained was good from the class, although reported issues included reduced school attendance, accessibility due to location, parental time off work, financial and time implications of travel, and unsuitability of group interventions for CYP with social anxiety and autism disorders. Description/Method A digital platform (Vimeo) was used to present Hypermobility education and exercise content created by the Paediatric Rheumatology team. The video aims to address these barriers, allowing more equality of access for all CYP; digital access allows CYP and parents to re-visit this information at any time, providing ongoing support for long term management of this condition. The digital platform is being developed to maximize the effectiveness of therapy resources and to improve the patients experience to promote self-management of their hypermobility. Funding was applied for via the Transformation service. Meeting with the hospital videographer enabled the AHP team to devise a template for the video including education on what is Hypermobility, on the role of exercise - targeted versus general, the benefits of exercise, supportive footwear, pain management, pacing, sleep hygiene, and hand function advice to manage hypermobility. The class exercise programme including hand therapy was videoed using a model. The video was filmed in half a day. It was filmed using an unscripted question- and- answer format. The Paediatric Rheumatology MDT were filmed in the video. The digital platform is currently with our videography team for further edit. Further signposting to established resources will be included in the Vimeo resource. Following a final edit, this resource will be used for this patient population group. Feedback from CYP and parents, along with other health professionals is planned. Discussion/Results On receipt of the first edit, multi-source feedback from parents/carers, CYP and other health professionals is planned via Microsoft Teams. It is hoped to show the video via Teams and seek anonymized feedback on the Teams chat function. This feedback will be discussed by the Paediatric Rheumatology MDT and will inform the final edit of the Hypermobility video resource. Further data from Vimeo analytics will be gathered e.g. how many times video watched, how long video is watched for, and what devices are being used. It is hoped that the Hypermobility Video will help support CYP and families in the long-term management and pain resulting from this condition. Key learning points/Conclusion It is hoped that the use of new technologies and innovative ways of delivering care can enable health professionals to implement clinical support, improve self-management of chronic pain related to hypermobility, whilst improving equitable patient access to therapy across the North-West. Multi-source feedback will help inform the final edit of the video resource. Ongoing evaluation and analysis of Vimeo data will inform whether the resource is a useful adjunct in long term management of pain arising from Hypermobility.

study demonstrates that majority of children presenting with hypermobility and musculoskeletal pain do not meet the criteria. Exclusion of all heritable connective tissue disease is important clinically and provides reassurance to families. The child's difficulties should then be the sole focus of management with promotion of increased functioning and pain management.