{"id":27,"date":"2022-12-14T21:38:52","date_gmt":"2022-12-14T21:38:52","guid":{"rendered":"https:\/\/mpsdsehcp-dev-001.azurewebsites.net\/en\/mucopolysaccharidosis-mps\/?page_id=27"},"modified":"2023-12-04T09:14:15","modified_gmt":"2023-12-04T09:14:15","slug":"managing-mps","status":"publish","type":"page","link":"https:\/\/hcp.biomarin.com\/en-gb\/mps\/managing-mps\/","title":{"rendered":"Managing MPS"},"content":{"rendered":"<div id=\"acf-block-63fdeaf71d658\" class=\"hero hero-no-overlay hero-large-first-para\">\n            <div class=\"hero-background-image hero-background-image-desktop\" style=\"background-image: url(https:\/\/hcp.biomarin.com\/en-gb\/mps\/wp-content\/uploads\/sites\/2\/2023\/05\/MPS-IVA-Jibreel-2000x423.jpg);\"><\/div>\n\t    <div class=\"hero-background-image hero-background-image-mobile\" style=\"background-image: url(https:\/\/hcp.biomarin.com\/en-gb\/mps\/wp-content\/uploads\/sites\/2\/2023\/12\/Blue.jpg?v=0.24);\"><\/div>\n    \t<div class=\"overlay\"><\/div>\n\t<div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t\t<div class=\"hero-content\">\n\t\t\t    \t\t\t\t\t\t\t\t\t\t\t\t    <h1>Managing MPS\n<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t\t    <p>Coordinated care for your patients: driving optimal outcomes in MPS management<\/p>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n\n<div id=\"acf-block-646354261ab29\" class=\"block split-content equal-bias block-tight-bottom\" data-muted-autoplay=\"false\">\n\t<div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t                                                                <div class=\"content-block first-block\">\n                                                                                                <h3>Coordinated, multidisciplinary care is critical in the management of complex multisystemic genetic diseases<sup>1<\/sup><\/h3>\n<p>Decades of ongoing research and clinical experience have produced a new era in the optimal management of mucopolysaccharidosis (MPS) disorders. This rapidly evolving standard of care for MPS relies on the geneticist at the centre of a healthcare delivery model that embodies coordinated, multidisciplinary care and provides physicians unmatched opportunities to change patients\u2019 lives.<sup>1\u20133<\/sup><\/p>\n<p><strong>Optimising patient outcomes requires coordinated care.<sup>1\u20133<\/sup><\/strong><\/p>\n                                                                                    <\/div>\n                    \n                                            <div class=\"content-block second-block\">\n                                                                                                                                                                                                                                                                                    \n                                    \n                                                                                                                \n                                    \n                                    <figure>\n                                        <div class=\"image image-rounded\">\n                                                                                            <img decoding=\"async\" class=\"\" src=\"https:\/\/hcp.biomarin.com\/en-gb\/mps\/wp-content\/uploads\/sites\/2\/2023\/01\/optimise_outcomes_FPO.jpg?v=0.24\" alt=\"MPS care team diagram\" \/>                                                                                    <\/div>\n                                                                            <\/figure>\n                                                                                    <\/div>\n                                                \t\t<\/div>\n\t<\/div>\n<\/div>\n\n<div id=\"Facilitating-efficient-coordination-of-clinicians\" class=\"block wrapped-content block-tight-top\">\n    <div class=\"wrapper\">\n        <div class=\"inner-wrapper\">\n                \n<div id=\"acf-block-63fdeaf71dd68\" class=\"block-wysiwyg\">\n            <h3>Facilitating efficient coordination of clinicians across specialities<sup>3<\/sup><\/h3>\n<p>The heterogeneous and variable nature of MPS disorders necessitates a personalised approach to coordinated patient care.<sup>4<\/sup> The aim of coordinated care is to help patients achieve a greater quality of life, which includes:<\/p>\n<ul>\n<li>More active lives with MPS disorders<\/li>\n<li>Sustained ability to achieve activities of daily living<\/li>\n<li>Empowerment through participation in optimising their own outcomes<sup>3<\/sup><\/li>\n<\/ul>\n<p>For paediatric patients with chronic, complex, multisystemic genetic diseases such as MPS, care through a coordinated approach is associated with reduction in healthcare utilisation and improved health outcomes.<sup>5\u20138<\/sup><\/p>\n<p>Prompt diagnosis and comprehensive multisystemic baseline evaluation at diagnosis and prior to enzyme replacement therapy (ERT) with a coordinated team are critical first steps toward establishing an individualised management plan.<sup>1<\/sup><\/p>\n<p>Coordination must be implemented across all elements of the broader healthcare system (e.g. speciality care, hospitals, home healthcare and community services) and within patients\u2019 individualised management plans.<sup>3<\/sup> Your role can be essential to the implementation of best practices in the management of MPS disorders and improvement of patient outcomes.<\/p>\n<p>To address the underlying cause and multisystemic complications of MPS, management guidelines for certain MPS sub-types call for a coordinated approach consisting of a team of specialists anchored by a geneticist or metabolic physician.<\/p>\n    <\/div>\n\n<figure id=\"acf-block-63fdeaf71dd93\">\n    <div class=\"image image-rounded\">\n                    <img decoding=\"async\" class=\"\" src=\"https:\/\/hcp.biomarin.com\/en-gb\/mps\/wp-content\/uploads\/sites\/2\/2022\/12\/benefits_table_FPO.png?v=0.24\" alt=\"benefits table FPO\" \/>            <\/div>\n    <\/figure>\n        <\/div>\n    <\/div>\n<\/div>\n\n<div id=\"acf-block-63fdeaf71ddbe\" class=\"block split-content equal-bias\" data-muted-autoplay=\"false\">\n\t<div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t                                                                <div class=\"content-block first-block\">\n                                                                                                <h3>Progress and promise through three pillars of care<\/h3>\n<p><strong>In the new era of MPS, the many aspects of disease management may be grouped into three pillars of care designed to optimise patient outcomes.<\/strong><\/p>\n<p>Application of optimal MPS disease management, grouped into the following three pillars of care, can help to improve patient outcomes:<\/p>\n<ul>\n<li>Treatment with ERT, if available<sup>9<\/sup><\/li>\n<li>Lifetime management<\/li>\n<li>Best practices in procedural care<\/li>\n<\/ul>\n                                                                                    <\/div>\n                    \n                                            <div class=\"content-block second-block\">\n                                                                                                                                                                                                                                                                                    \n                                    \n                                                                                                                \n                                    \n                                    <figure>\n                                        <div class=\"image image-rounded\">\n                                                                                            <img decoding=\"async\" class=\"\" src=\"https:\/\/hcp.biomarin.com\/en-gb\/mps\/wp-content\/uploads\/sites\/2\/2022\/12\/3_pillares_FPO.png?v=0.24\" alt=\"3 pillares FPO\" \/>                                                                                    <\/div>\n                                                                            <\/figure>\n                                                                                    <\/div>\n                                                \t\t<\/div>\n\t<\/div>\n<\/div>\n\n<div id=\"Tabbed-block-1\" class=\"block tabbed-content block-tight-top block-tight-bottom\">\n\t    <div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t                                                                                        <ul class=\"tabs\">\n                                                                                                                            <li><a href=\"#Tabbed-block-1_0\">Lifetime Management\n<\/a><\/li>\n                                                                                                                                                            <li><a href=\"#Tabbed-block-1_1\">Procedural Care\n<\/a><\/li>\n                                                                                                                                                            <li><a href=\"#Tabbed-block-1_2\">Enzyme replacement therapy\n<\/a><\/li>\n                                                                                    <\/ul>\n                                                                                                                                                <div class=\"box\">\n                                                                                            <div class=\"tab-content\" id=\"Tabbed-block-1_0\" style=\"display:none;\">\n                                                                                                                                                                                                                        <h3>Lifetime management in the new era of MPS<\/h3>\n<p>The new era of management for progressive, complex, genetic conditions, such as mucopolysaccharidosis (MPS) disorders, hinges on the efficient coordination of each patient\u2019s healthcare team.<sup>1<\/sup><\/p>\n<p>Geneticists and\/or metabolic specialists are typically at the centre and help to coordinate multidisciplinary care and an individualised management plan.<sup>3,4<\/sup><\/p>\n<p><strong>In patients with MPS disorders, the benefits of coordinated care may improve many aspects of a patient\u2019s, and a family\u2019s, outlook over the long term.<sup>3,4<\/sup><\/strong><\/p>\n<p>Many MPS disorders have available management guidelines and speciality-specific consensus recommendations regarding lifetime management of MPS. Guidelines typically recommend the following:<sup>3,4<\/sup><\/p>\n<ul>\n<li>Comprehensive baseline assessments (e.g. speciality-specific evaluations, functional performance, and disease burden) by appropriate specialists<\/li>\n<li>Regular, defined monitoring intervals to assess multisystemic disease progression<\/li>\n<\/ul>\n<p>Early and ongoing assessments from a coordinated-care team can improve patient outcomes and may help prevent irreversible damage.<sup>4<\/sup><\/p>\n                                                                                                                                                                                                                                <h3>Ongoing multisystemic assessments in patients with Morquio A<sup>3<\/sup><\/h3>\n                                                                                                                                                                                                                                                                                                                                                                                                                                \n                                                \n                                                                                                                                                    \n                                                \n                                                <figure>\n                                                    <div class=\"image image-rounded\">\n                                                                                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/hcp.biomarin.com\/en-gb\/mps\/wp-content\/uploads\/sites\/2\/2022\/12\/multisystemic_table.svg\" alt=\"multisystemic table\" \/>                                                                                                            <\/div>\n                                                                                                            <figcaption><p><small><em>Adapted from Hendriksz, Am I Med Genet Part A, 2014.<\/em> Abbreviations: 6MWT, 6-minute walk test; CT, computed tomography; ERT, enzyme replacement therapy; FVC, forced vital capacity; MRI, magnetic resonance imaging; MVV, maximum voluntary ventilation; QoL, quality of life.<\/small><\/p>\n<\/figcaption>\n                                                                                                    <\/figure>\n                                                                                                                                                                                                                                <p>Frequency of assessments and involvement of specific specialists vary across the different MPS types. For patients with MPS diseases associated with primary neurodegenerative and cognitive complications, such as MPS I, II, and III, additional and regular neurobehavioural and psychiatric evaluations are recommended.<sup>4-6<\/sup><\/p>\n<p>In addition to speciality-specific assessments that should be done to facilitate positive long-term outcomes for patients with MPS, important steps can be taken by the coordinating physician, typically the geneticist and\/or metabolic specialist, related to general health. Their role in educating other healthcare professionals (e.g. dentists, physiotherapists, paediatricians, family doctors) and families about the disease and general management strategies is critical and should include the following:<sup>3<\/sup><\/p>\n<ul>\n<li>Discussing the risks and benefits of intervention and necessary precautions with treatments and evaluations<sup>3<\/sup><\/li>\n<li>Dental considerations\n<ul>\n<li>The wide range of craniofacial and dental abnormalities, which varies by MPS subtype may or may not predispose patients to an increased risk of dental disease<sup>7<\/sup><\/li>\n<li>Close monitoring of dental development (at least annually) and regular dental care to prevent caries and attrition of the teeth<sup>3<\/sup><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li>The wide range of craniofacial and dental abnormalities, which varies by MPS subtype may or may not predispose patients to an increased risk of dental disease.<sup>7<\/sup> Close monitoring of dental development (at least annually) and regular dental care to prevent caries and attrition of the teeth<sup>3<\/sup><\/li>\n<\/ul>\n<p><strong>Speciality-specific assessments, as well as regular physical examinations and overall health interventions, should follow recommended guidelines, which may vary among MPS subtypes.<sup>3<\/sup><\/strong><\/p>\n<p><a href=\"https:\/\/hcp.biomarin.com\/en-gb\/mps\/what-is-mps\/types-of-mps\/\">Learn more about specific MPS types<\/a><\/p>\n                                                                                                                                                                                                                                <h3>Continuity of care into adulthood optimizes long-term outcomes<\/h3>\n<p>Improvements in the treatment of MPS disorders are contributing to long-term outcomes for patients, necessitating new approaches to lifetime management.<\/p>\n<p>As patients age, some may begin to manage their own healthcare, making physician-guided transition to the adult setting critical.<sup>3<\/sup> Physicians should ensure the following:<\/p>\n<ul>\n<li>Early and ongoing assessments from a coordinated-care team to evaluate disease progression across organ systems<sup>4<\/sup><\/li>\n<li>Maintenance and assessment of patients\u2019 ability to perform activities of daily living<sup>4<\/sup><\/li>\n<li>Formal, site-specific transition strategies, including identification of adult specialists with long-term MPS management experience<sup>1<\/sup><\/li>\n<li>That patients are not lost to follow-up<sup>3<\/sup><\/li>\n<\/ul>\n<p>Encourage patients and their families to be involved in site-specific transition strategies, which can be tailored to optimize each individual\u2019s long-term care plan.<sup>3<\/sup><\/p>\n<p>The transition from pediatric to adult care and long-term adult care are critical areas to address in care plans for adolescent and adult patients.<sup>3<\/sup> Long-term care considerations are ideally best addressed in a center with significant MPS experience, and they require careful coordination across specialities.<sup>3,8<\/sup> Long-term issues include but are not limited to:<\/p>\n<ul>\n<li>Best practices in adult-care transition<\/li>\n<li>Gynaecological considerations\n<ul>\n<li>Pregnancy and maternity-related issues<\/li>\n<li>ERT use during pregnancy and lactation<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li>Long-term port management<\/li>\n<li>Long-term pain management<\/li>\n<\/ul>\n<p>Long-term management of MPS disorders\u2014including ongoing assessments and a site-specific transition strategy from pediatric to adult care\u2014may lead to sustained improvement in quality of life and a better future for your patients.<sup>3,8-10<\/sup><\/p>\n                                                                                                                                                        <\/div>\n                                                                                                                            <div class=\"tab-content\" id=\"Tabbed-block-1_1\" style=\"display:none;\">\n                                                                                                                                                                                                                        <h3>Procedural care requires coordinated surgical planning across specialities<\/h3>\n<p>Because clinical manifestations of mucopolysaccharidosis (MPS) disorders are multisystemic, a patient-specific, multidisciplinary approach is required to proactively recognise and manage complications. ENT manifestations and complications are almost universal across MPS types.<sup>1<\/sup><\/p>\n<p>Patients with MPS disorders typically have a number of surgical interventions over their lifetimes. A natural history study assessing a cohort of 325 patients with Morquio A (MPS IVA) found that over 70% of patients had at least one surgical procedure.<sup>2<\/sup><\/p>\n<p><strong>Surgical burden in patients with Morquio A<sup>2,a<\/sup><\/strong><\/p>\n                                                                                                                                                                                                                                                                                                                                                                                                                                \n                                                \n                                                                                                                                                    \n                                                \n                                                <figure>\n                                                    <div class=\"image image-rounded\">\n                                                                                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/hcp.biomarin.com\/en-gb\/mps\/wp-content\/uploads\/sites\/2\/2022\/12\/surgical_burden_table.svg\" alt=\"surgical burden table\" \/>                                                                                                            <\/div>\n                                                                                                    <\/figure>\n                                                                                                                                                                                                                                <p><small>Adapted from Harmatz,<em> Mol Genet Metab<\/em>, 2013.<\/small><\/p>\n<p>Data based on medical history reviews of 325 patients with Morquio A and a mean age of 14.5 years<\/p>\n<p>Patients with MPS have a high perisurgical mortality rate due to multiple factors, including upper and lower airway obstruction, cervical spinal instability, respiratory impairment, cardiovascular morbidities, and frequent infections.<sup>2-4<\/sup> For example, surgical complications resulted in an 11% mortality rate in patients with Morquio A (n=27).<sup>5<\/sup><\/p>\n<p>Creating a surgical plan is crucial and involves a multidisciplinary team of specialists who are, ideally, also experienced in treating patients with MPS.<sup>3<\/sup><\/p>\n<p>Specialties represented may include anaesthesiology, pulmonology, neurosurgery, cardiology, ENT and radiology.<sup>4,6,7<\/sup><\/p>\n<p>In MPS disorders with neurodegenerative and cognitive implications, additional specialities, such as psychiatry and neurology, may be involved.<sup>8<\/sup><\/p>\n<p>In addition to the management guidelines, specialists should consult orthopaedic and surgical guidelines.<\/p>\n<p>Surgical risk assessment and perioperative monitoring are fundamental components of a tailored surgical plan, and they can reduce the risks of negative surgical outcomes and mortality in patients with MPS.<sup>3,9,10<\/sup><\/p>\n                                                                                                                                                                                                                                <p><strong>Optimize patient outcomes through coordinated management.<\/strong><\/p>\n                                                                                                                                                                                                                                <h3>Operative care considerations<sup>6,11<\/sup><\/h3>\n<h4>Preoperative considerations<\/h4>\n<ul>\n<li>Upper airway obstruction<\/li>\n<li>Respiratory dysfunction<\/li>\n<li>Spinal cord compression<\/li>\n<li>Intubation\/extubation planning<\/li>\n<\/ul>\n<h4>Intraoperative considerations<\/h4>\n<ul>\n<li>Risks\/benefits of mask ventilation or awake fibre optic induction with spontaneous ventilation<\/li>\n<li>Neurophysiological monitoring<\/li>\n<li>Body positioning (head and neck should be carefully maintained in the neutral position such that clavicles are aligned with the external auditory meatus)<\/li>\n<\/ul>\n<h4>Postoperative considerations<\/h4>\n<ul>\n<li>Early extubation when possible<\/li>\n<li>Close monitoring for airway and pulmonary oedema<\/li>\n<li>Monitoring need for reintubation<\/li>\n<li>Availability of emergency tracheostomy at any time<\/li>\n<li>Extubation only after patient is fully awake and has full return of motor power<\/li>\n<\/ul>\n                                                                                                                                                                                                                                                                                                                                                                                                                                \n                                                \n                                                \n                                                \n                                                <figure>\n                                                    <div class=\"image\">\n                                                                                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/hcp.biomarin.com\/en-gb\/mps\/wp-content\/uploads\/sites\/2\/2022\/12\/risk_infographic_FPO.png?v=0.24\" alt=\"risk infographic FPO\" \/>                                                                                                            <\/div>\n                                                                                                            <figcaption><p>Skeletal and multisystemic complications increase the risk of perioperative morbidity and mortality \u2013 guidelines suggest combining surgeries to reduce risk of multiple anaesthetic episodes. Identify risks to lower the likelihood of surgical complications in MPS disorders.<sup>9,12<\/sup><\/p>\n<\/figcaption>\n                                                                                                    <\/figure>\n                                                                                                                                                        <\/div>\n                                                                                                                            <div class=\"tab-content\" id=\"Tabbed-block-1_2\" style=\"display:none;\">\n                                                                                                                                                                                                                        <h3>When available, enzyme replacement therapy (ERT) is the first step to optimal outcomes.<\/h3>\n<p>Supportive clinical evidence from sibling studies suggests that early intervention provides multiple opportunities to improve patient outcomes through disease-specific management and early initiation of ERT, if available.<sup>1-6<\/sup><\/p>\n<p>ERT, whether initiated early or later in life, has been shown to improve key clinical parameters, such as endurance and pulmonary measures, which are critical to quality of life, maintenance of ambulation and activities of daily living.<sup>7,8<\/sup><\/p>\n<p>ERT is currently available in many countries for the treatment of patients with mucopolysaccharidosis (MPS) I, II, IVA, VI and VII.<sup>8,9<\/sup><\/p>\n<p>When available, home-based infusion of ERT is an important clinical consideration.<sup>10-12<\/sup><\/p>\n<p><strong>Management guidelines and expert reviews on MPS disorders call for initiation of ERT, when available, as soon as diagnosis is confirmed.<sup>6,8,13<\/sup><\/strong><\/p>\n                                                                                                                                                        <\/div>\n                                                                                    <\/div>\n                                    \t\t\t\t\t\t                                                                                    <ul class=\"tabs tabs-bottom\">\n                                                                                                                            <li><a href=\"#Tabbed-block-1_0\">Lifetime Management\n<\/a><\/li>\n                                                                                                                                                            <li><a href=\"#Tabbed-block-1_1\">Procedural Care\n<\/a><\/li>\n                                                                                                                                                            <li><a href=\"#Tabbed-block-1_2\">Enzyme replacement therapy\n<\/a><\/li>\n                                                                                    <\/ul>\n                                                \t\t<\/div>\n\t<\/div>\n<\/div>\n\n<div id=\"acf-block-63fdeaf71e105\" class=\"block call-to-action\">\n    <div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t\t<div class=\"box\" style=\"\">\n\t\t\t\t<div class=\"overlay\"><\/div>\n\t\t\t\t<div class=\"cta-content\">\n\t\t\t\t    \t\t\t\t\t<div class=\"cta-content-main\">\n                        <div class=\"content-block\">\n\t\t\t\t\t        \t\t\t\t\t        \t\t\t\t\t\t        <h2 class=\"h3\">Register for access\n<\/h2>\n\t\t\t\t\t\t    \t\t\t\t\t\t    \t\t\t\t\t\t        <p>Get access to the latest webinars, meetings and events about MPS; registration is quick and easy.<\/p>\n\t\t\t\t\t\t    \t\t\t\t\t    <\/div>\n\t\t\t\t\t                                <div class=\"content-block\">\n                                <p><a class=\"button button-ghost button-arrow\" href=\"http:\/\/www.mpsmeetings.com\/register\" target=\"_blank\">Register Now<\/a><\/p>\n                            <\/div>\n\t\t\t\t\t                        <\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n<div id=\"acf-block-63fdeaf71e079\" class=\"block references block-tight-top block-tight-bottom\">\n    <div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t    \t\t\t    <h4>References:\n<\/h4>\n\t\t\t\t\t\t                <ol>\n                                                                                                                        <li><span>Hendriksz CJ  <em>et al.<\/em>  International guidelines for the management and treatment of Morquio A syndrome. <em>Am J Med Genet Part A<\/em> 2014;9999A:1\u201315.  \n<\/span><\/li>\n                                                                                                                                                <li><span>Muenzer J. The mucopolysaccharidoses: a heterogeneous group of disorders with variable pediatric presentations. <em>J Pediatr<\/em> 2004;144(suppl 5):S27\u2013S34. \n<\/span><\/li>\n                                                                                                                                                <li><span>Agency for Healthcare Research and Quality. Defining the PCMH. https:\/\/pcmh.ahrq.gov\/page\/defining-pcmh. Accessed December 15, 2015. \n<\/span><\/li>\n                                                                                                                                                <li><span>Hendriksz CJ  <em>et al.<\/em>  Review of clinical presentation and diagnosis of mucopolysaccharidosis IVA. <em>Mol Genet Metab <\/em>2013;110:54\u201364.  \n<\/span><\/li>\n                                                                                                                                                <li><span>Casey PH  <em>et al.<\/em>  Effect of hospital-based comprehensive care clinic on health costs for Medicaid-insured medically complex children. <em>Arch Pediatr Adolesc Med <\/em>2011;165(5):392\u2013398. \n<\/span><\/li>\n                                                                                                                                                <li><span>Mosquera RA  <em>et al.<\/em> Effect of an enhanced medical home on serious illness and cost of care among high-risk children with chronic illness: a randomized clinical trial. <em>JAMA <\/em>2014;312(24):2640\u20132648. \n<\/span><\/li>\n                                                                                                                                                <li><span>Klitzner TS <em>et al.<\/em> Benefits of care coordination for children with complex disease: a pilot medical home project in a resident teaching clinic. <em>J Pediatr<\/em>  2010;156(6):1006\u20131010. \n<\/span><\/li>\n                                                                                                                                                <li><span>Gordon JB <em>et al.<\/em> A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs. <em>Arch Pediatr Adolesc Med <\/em>2007;161(10):937\u2013944. \n<\/span><\/li>\n                                                                                                                                                <li><span>Hendriksz C. Improved diagnostic procedures in attenuated mucopolysaccharidosis. <em>BrJ Hosp Med<\/em> 2011;72(2):91-95. \n<\/span><\/li>\n                                                                                                                                                <li><span>Muenzer J <em>et al.<\/em> International Consensus Panel on the Management and Treatment of Mucopolysaccharidosis I. Mucopolysaccharidosis I: management and treatment guidelines. <em>Pediatrics<\/em> 2009;123(1):19-29.  \n<\/span><\/li>\n                                                                                                                                                <li><span>Muenzer J, Beck M, Eng CM, et al.<em>Genet Med.<\/em> 2011;13(2):95\u2013101. doi:10.1097\/GIM.0b013e3181fea459. \n<\/span><\/li>\n                                                                                                                                                <li><span>Kakkis ED <em>et al.<\/em> The mucopolysaccharidoses. In: Berg BO, ed <em>Principles of child neurology.<\/em> New York, NY: McGraw-Hill; 1996:1141\u20131166. \n<\/span><\/li>\n                                                            <\/ol>\n\t\t\t\t\t<\/div>\n\t<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-27","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.2 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Managing MPS - BioMarin MPS DSE HCP EN-GB<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/hcp.biomarin.com\/en-gb\/mps\/managing-mps\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Managing MPS - 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