Ehlers-Danlos expert panel report : Rapport du Comité d'experts pour le traitement du syndrome d'Ehlers-Danlos : rapport final : présenté au Ministère de la santé et des soins de longue durée

Membership and Mandate Critical Care Services Ontario ( CCSO), at the request of the MOHLTC, formed an Expert Panel (EDS Expert Panel) in late September 2015 to better understand issues related to access to care for EDS patients, and where potential improvements could be made. [...] The work of the EDS Expert Panel included: • A r eview of providers and programs to support EDS patients in Ontario; • A r eview of best-practice models in other jurisdictions; • Analysis of potential gaps in service that may exist for the Ontario EDS patient population; and • Provision of recommendations for an evidence-based care pathway for EDS patients, ensuring smooth transitions between paed [...] Evaluate for: • Anatomical abnormalities of the cranio-cervical junction (e.g., basilar invagination; platybasia) • Assimilation anomalies o f the skull base/upper cervical spine • Anomalies of C1-2 • Anomalies of the subaxial cervical spine 3. Cervical Spine MRI to evaluate for: • Evidence of brainstem/upper cervical cord. [...] Patients 3.0 Potential Model of Care for Ongoing EDS M anagement As the EDS Expert Panel reviewed t he challenges and explored opportunities t o provide improved care for patients with EDS, a recurring theme emerged regarding the needs for ongoing management of patients. [...] These professionals would: • Manage the ongoing care of the EDS patient, either as the most responsible physician or by providing advice to a primary care provider o n treatment and management of the patient in.