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	<title>DRPLA Centers of Excellence Archive - CureDRPLA</title>
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	<title>DRPLA Centers of Excellence Archive - CureDRPLA</title>
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		<title>London Ataxia Centre</title>
		<link>https://curedrpla.org/coe/london-ataxia-centre/</link>
		
		<dc:creator><![CDATA[Shohei Shibata]]></dc:creator>
		<pubDate>Sat, 29 Mar 2025 19:18:04 +0000</pubDate>
				<guid isPermaLink="false">https://curedrpla.org/?post_type=coe&#038;p=2755</guid>

					<description><![CDATA[<p>This DRPLA Center of Excellence was accredited to Prof Paola Giunti and Dr Hector Garcia-Moreno from the London Ataxia Centre, at the National Hospital for Neurology and Neurosurgery and the Department of Clinical and Movement Neurosciences at UCL Queen Square Institute of Neurology on March 26, 2025. Clinical Services The London Ataxia Centre provides a [&#8230;]</p>
<p>The post <a href="https://curedrpla.org/coe/london-ataxia-centre/">London Ataxia Centre</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
]]></description>
										<content:encoded><![CDATA[
<p>This DRPLA Center of Excellence was accredited to Prof Paola Giunti and Dr Hector Garcia-Moreno from the London Ataxia Centre, at the National Hospital for Neurology and Neurosurgery and the Department of Clinical and Movement Neurosciences at UCL Queen Square Institute of Neurology on March 26, 2025.</p>



<h3 class="wp-block-heading"><strong>Clinical Services</strong></h3>



<p>The London Ataxia Centre provides a national service, with patients referred from Scotland, Northern Ireland, Wales and England. A separate pediatric multidisciplinary clinic operates 4 times per year, serving children under the age of 16 in Scotland, Northern Ireland, Wales and England.</p>



<p>The London Ataxia Centre has close links with several other specialists with expertise in managing ataxia related symptoms, with direct referral pathways from the ataxia clinics for people with DRPLA in the following disciplines:</p>



<ul>
<li>Cardiology</li>



<li>Gastroenterology</li>



<li>Uro-Neurology (dedicated ataxia clinic)</li>



<li>Audio-Vestibular service (dedicated ataxia clinic)</li>



<li>Sleep Respiratory Medicine</li>



<li>Orthotic Service</li>



<li>Dietician Service</li>



<li>Neuropsychiatry</li>



<li>Neurophysiology</li>



<li>Neuro-ophthalmology (dedicated ataxia clinic)</li>



<li>Neuro-physiotherapy (dedicated ataxia clinic)</li>



<li>Occupational Therapy (dedicated ataxia clinic)</li>



<li>Speech and Language Therapy (dedicated ataxia clinic)</li>



<li>Neuropsychology</li>



<li>Neurological and spinal surgery</li>



<li>Orthopedics</li>



<li>Audio-vestibular service</li>



<li>Specialist Spasticity Service</li>



<li>Vocational Rehabilitation Service</li>



<li>ENT Service</li>
</ul>



<h3 class="wp-block-heading"><strong>About the Applicants</strong></h3>



<p>Professor Paola Giunti is Professorial Research Associate and Honorary Consultant at UCL/UCLH. Paola Giunti studied medicine at Sapienza University of Rome, Italy. She completed her training in neurology in the same university and obtained her PhD researching neurogenetic disorders and the dominant ataxias. Paola has a longstanding interest in the pathogenesis of neurological disorders, in particular the inherited cerebellar ataxias and other movement disorders.</p>



<p>She established the London Ataxia Centre in 2005, a robust model of translational clinical service. This has been accredited as the first center of clinical excellence in the UK by Ataxia UK, the charity of ataxia patients.</p>



<p>Dr Hector Garcia-Moreno has worked as a Clinical Research Fellow at the London Ataxia Centre since 2016. He achieved his medical degree at Universidad Autonoma de Madrid (Madrid, Spain) and completed his Neurology training at Hospital Clinico San Carlos (Madrid, Spain). He completed his PhD studies at UCL, with natural history and biomarkers projects in spinocerebellar ataxia type 3/Machado-Joseph disease, and xeroderma pigmentosum. Dr Garcia-Moreno has been leading the DRPLA-NHBS at UCL.</p>



<h3 class="wp-block-heading"><strong>Contact Information</strong></h3>



<p>You can reach Prof Paola Giunti at&nbsp;<a href="mailto:paola.giunti@nhs.net">paola.giunti@nhs.net</a>, Dr Hector Garcia-Moreno at <a href="mailto:hector.garcia-moreno@nhs.net">hector.garcia-moreno@nhs.net</a> or by calling +44-02034483100.</p>
<p>The post <a href="https://curedrpla.org/coe/london-ataxia-centre/">London Ataxia Centre</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
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			</item>
		<item>
		<title>Seoul Metropolitan Government-Seoul National University Boramae Medical Center / Seoul National University College of Medicine</title>
		<link>https://curedrpla.org/coe/seoul-metropolitan-government-seoul-national-university-boramae-medical-center-seoul-national-university-college-of-medicine/</link>
		
		<dc:creator><![CDATA[Shohei Shibata]]></dc:creator>
		<pubDate>Mon, 21 Oct 2024 12:07:01 +0000</pubDate>
				<guid isPermaLink="false">https://curedrpla.org/?post_type=coe&#038;p=2656</guid>

					<description><![CDATA[<p>This DRPLA Center of Excellence was accredited to Dr Jee-Young Lee and Dr Ryul Kim from the Seoul Metropolitan Government-Seoul National University Boramae Medical Center and Seoul National University College of Medicine on October 10, 2024. Clinical Services Dr Jee-Young Lee and Dr Ryul Kim typically conduct routine follow-up visits every 4 to 6 months [&#8230;]</p>
<p>The post <a href="https://curedrpla.org/coe/seoul-metropolitan-government-seoul-national-university-boramae-medical-center-seoul-national-university-college-of-medicine/">Seoul Metropolitan Government-Seoul National University Boramae Medical Center / Seoul National University College of Medicine</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
]]></description>
										<content:encoded><![CDATA[
<p>This DRPLA Center of Excellence was accredited to Dr Jee-Young Lee and Dr Ryul Kim from the Seoul Metropolitan Government-Seoul National University Boramae Medical Center and Seoul National University College of Medicine on October 10, 2024.</p>



<h3 class="wp-block-heading"><strong>Clinical Services</strong></h3>



<p>Dr Jee-Young Lee and Dr Ryul Kim typically conduct routine follow-up visits every 4 to 6 months to monitor the condition, and these follow-ups include comprehensive general neurologic examinations as well as specific symptom assessments including cognitive function tests. In addition, their team can prescribe medications aimed at controlling neurological symptoms. SMG-SNU BMC operates as a referral hospital within the Korean healthcare system, which indicates that patients can be referred to them from local clinics and healthcare providers across the region. Through this referral system, people with DRPLA visiting their clinic can also access other specialist services (e.g., epilepsy, neurogenetics).</p>



<h3 class="wp-block-heading"><strong>About the Applicants</strong></h3>



<p>Dr Jee-Young Lee and Dr Ryul Kim are neurologists and movement disorders specialists, with expertise in DRPLA. Together they have seen and followed more than 20 people with DRPLA.</p>



<p>Dr Jee-Young Lee and Dr Ryul Kim are taking part in the DRPLA Natural History and Biomarkers Study, collaborating with the study sites to provide clinical information and biosamples.</p>



<h3 class="wp-block-heading"><strong>Contact Information</strong></h3>



<p>You can reach Dr. Jee-Young Lee at&nbsp;<a href="mailto:wieber04@snu.ac.kr">wieber04@snu.ac.kr</a> or by calling +82-2-870-2476.<br>You can reach Ryul Kim at&nbsp;<a href="mailto:arkrk86@snu.ac.kr">arkrk86@snu.ac.kr</a> or by calling +82-2-870-2478.</p>
<p>The post <a href="https://curedrpla.org/coe/seoul-metropolitan-government-seoul-national-university-boramae-medical-center-seoul-national-university-college-of-medicine/">Seoul Metropolitan Government-Seoul National University Boramae Medical Center / Seoul National University College of Medicine</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
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			</item>
		<item>
		<title>Department of Neurology, The First Affiliated Hospital Fujian Medical University</title>
		<link>https://curedrpla.org/coe/department-of-neurology-the-first-affiliated-hospital-fujian-medical-university/</link>
		
		<dc:creator><![CDATA[Shohei Shibata]]></dc:creator>
		<pubDate>Mon, 21 Oct 2024 12:05:54 +0000</pubDate>
				<guid isPermaLink="false">https://curedrpla.org/?post_type=coe&#038;p=2658</guid>

					<description><![CDATA[<p>This DRPLA Center of Excellence was accredited to Dr Shi-Rui Gan from the Department of Neurology, The First Affiliated Hospital, Fujian Medical University on October 10, 2024. Clinical Services At Dr Gan’s institution, they offer an extensive array of clinical and professional services, meticulously tailored to address the intricate needs of people with DRPLA.&#160; These [&#8230;]</p>
<p>The post <a href="https://curedrpla.org/coe/department-of-neurology-the-first-affiliated-hospital-fujian-medical-university/">Department of Neurology, The First Affiliated Hospital Fujian Medical University</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
]]></description>
										<content:encoded><![CDATA[
<p>This DRPLA Center of Excellence was accredited to Dr Shi-Rui Gan from the Department of Neurology, The First Affiliated Hospital, Fujian Medical University on October 10, 2024.</p>



<h3 class="wp-block-heading"><strong>Clinical Services</strong></h3>



<p>At Dr Gan’s institution, they offer an extensive array of clinical and professional services, meticulously tailored to address the intricate needs of people with DRPLA.&nbsp; These services encompass:</p>



<ol>
<li>Neurology: conduct comprehensive neurological evaluations, incorporating genetic testing and diagnostic imaging to provide a thorough understanding of each patient&#8217;s condition.</li>



<li>Genetics Counseling: expert counselors offer guidance to patients and their families on genetic testing outcomes, inheritance patterns, and family planning options, ensuring informed decision-making.</li>



<li>Movement Disorders Management: specialize in caring for movement disorders associated with DRPLA, effectively managing symptoms such as chorea, dystonia, and spasticity.</li>



<li>Psychiatric Support: offer evaluation and treatment for conditions like depression, anxiety, and behavioral changes.</li>



<li>Rehabilitation Services: physiotherapy and occupational therapy programs are designed to optimize patients&#8217; functional abilities and enhance their overall quality of life.</li>



<li>Nutritional Counseling: provide dietary assessments and tailored guidance to help patients manage nutritional challenges specific to DRPLA.</li>
</ol>



<p>This clinic operates a well-structured referral system that guarantees seamless care coordination for people with DRPLA.&nbsp; Referrals can originate from primary care providers, specialists, or through self-referral by patients and their families.&nbsp; Upon receipt of a referral, the team promptly schedules an initial consultation.&nbsp;</p>



<h3 class="wp-block-heading"><strong>About the Applicants</strong></h3>



<p>Dr Shi-Rui Gan specializes in neurology and has over 14 years of clinical experience. In 2017, he traveled to the Ataxia Research Center at Columbia University in the U.S. to undertake a one-year advanced training with Professor Sheng-Han Kuo, from which he received advanced training in dyspraxia, ataxia, neurogenetics, and epilepsy.</p>



<p>Having encountered and handled at least 100 cases of DRPLA during his career, Dr. Gan possesses a profound understanding of the clinical presentation, diagnostic criteria, and management of DRPLA. This expertise enables him to accurately diagnose and provide comprehensive care to people with DRPLA. Additionally, Dr. Gan is actively engaged in research related to genetic disorder.</p>



<h3 class="wp-block-heading"><strong>Contact Information</strong></h3>



<p>You can reach Dr Shi-Rui Gan at&nbsp;<a href="mailto:ganshirui@fjmu.edu.cn">ganshirui@fjmu.edu.cn</a> or by calling +86-13850172725.</p>
<p>The post <a href="https://curedrpla.org/coe/department-of-neurology-the-first-affiliated-hospital-fujian-medical-university/">Department of Neurology, The First Affiliated Hospital Fujian Medical University</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
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			</item>
		<item>
		<title>The University of North Carolina at Chapel Hill</title>
		<link>https://curedrpla.org/coe/the-university-of-north-carolina-at-chapel-hill/</link>
		
		<dc:creator><![CDATA[Shohei Shibata]]></dc:creator>
		<pubDate>Sat, 08 Jun 2024 19:59:37 +0000</pubDate>
				<guid isPermaLink="false">http://localhost:10013/?post_type=coe&#038;p=2461</guid>

					<description><![CDATA[<p>The DRPLA Center of Excellence was accredited to Dr Yael Shiloh-Malasky and Dr Zheng (Jane) Fan from the University of North Carolina at Chapel Hill on June 6, 2024. Clinical Services Adult and pediatric neurologists with expertise in neurogenetics, epilepsy and movement disorders are available for patients. They also have access to a genetic counselor, [&#8230;]</p>
<p>The post <a href="https://curedrpla.org/coe/the-university-of-north-carolina-at-chapel-hill/">The University of North Carolina at Chapel Hill</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
]]></description>
										<content:encoded><![CDATA[
<p>The DRPLA Center of Excellence was accredited to Dr Yael Shiloh-Malasky and Dr Zheng (Jane) Fan from the University of North Carolina at Chapel Hill on June 6, 2024.</p>



<h3 class="wp-block-heading">Clinical Services</h3>



<p>Adult and pediatric neurologists with expertise in neurogenetics, epilepsy and movement disorders are available for patients. They also have access to a genetic counselor, dietician, and social worker in the neurology clinic.</p>



<p>UNC is a regional and state referral hospital with a broad scope of inpatient and outpatient services. Specialties are available through referral for all ages, from pediatric to adult. These specialties include, but are not limited to orthopedics, physical medicine and rehabilitation, gastroenterology, pulmonology, neuropsychology, palliative and complex care specialists. Therapy specialists, including physical therapists, occupational therapists, and speech and language pathologists, are available for all patients as well.</p>



<h3 class="wp-block-heading">About the Applicants</h3>



<p>Yael Shiloh-Malawsky MD, board certified in Neurology with Special Qualifications in Child Neurology, and subspecialty in Epilepsy. Has experience in clinical pediatric neurology and epilepsy, and specific expertise in neurogenetics, epilepsy, clinical trials, and natural history studies. Serves as the clinical core leader and co-founder of UNC Epilepsy Neurogenetics Initiative (ENGI), co-director of the UNC Rett Center of Excellence (CoE) as part of the International Rett Syndrome Foundation CoE network, and the Program Director of UNC Child Neurology Residency Program. Has served as the PI of clinical studies including drug trials, natural history, and other studies. Has clinical experience in the care of patients with childhood onset DRPLA, has been part of the development team of DRPLA Natural History and Biomarkers Study (DRPLA-NHBS) and is the primary investigator of the study at the UNC site.</p>



<p>Zheng (Jane) Fan MD, Co-Chief of the Division of Precision Medicine and Neurogenetics. Professor of Neurology, Child Neurology, Pediatric Sleep Medicine, Pediatric Neuromuscular Disorders, Clinical Genetics. Medical Director of the sleep laboratory. Clinical and research focus in rare neurogenetic disorders including therapeutic interventions of genetic disorders and sleep/EEG characteristics in neurogenetic disorders. Was part of the development team of the DRPLA Natural History and Biomarkers Study (DRPLA-NHBS) and co-investigator of the study at the UNC site.</p>



<h3 class="wp-block-heading">Contact Information</h3>



<p>You can reach Dr. Yael Shiloh-Malawsky at <a href="mailto:yaelm@neurology.unc.edu">yaelm@neurology.unc.edu</a>, or by calling 919-966-8178.</p>



<p>You can reach Dr. Zheng (Jane) Fan at <a href="mailto:zheng_fan@med.unc.edu">zheng_fan@med.unc.edu</a> or by calling 919-966-8178.</p>



<p>(Title image courtesy of the University of North Carolina)</p>
<p>The post <a href="https://curedrpla.org/coe/the-university-of-north-carolina-at-chapel-hill/">The University of North Carolina at Chapel Hill</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
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