P486: A global Delphi consensus approach to monitoring and integrated care coordination of patients with alpha-mannosidosis

• Can Ficicioglu,
• Nicole Muschol,
• Barbara Burton,
• Martin Magner,
• Mercedes Gil-Campos,
• Monica Lopez Rodriguez,
• Parul Jayakar,
• Allan Lund,
• Galit Tal,
• Jose Elias Garcia-Ortiz,
• Karolina Stepien,
• Carolyn Ellaway,
• Walla Al-Hertani,
• Roberto Giugliani,
• Sara Cathey,
• Julia Hennermann,
• Christina Lampe,
• Markey McNutt,
• Florian Lagler,
• Maurizio Scarpa,
• Vernon Sutton,
• Nathalie Guffon

Affiliations

Can Ficicioglu

The Perelman School of Medicine at UPENN

Nicole Muschol

International Center for Lysosomal Disorders, University Medical Center Hamburg-Eppendorf, Hamburg, Germany

Barbara Burton

Northwestern University and Ann & Robert H. Lurie Children's Hospital of Chicago

Martin Magner

Department of Paediatrics, First Faculty of Medicine, Charles University, General University Hospital, Czech Republic

Mercedes Gil-Campos

Reina Sofía University Hospital, Maimonides Biomedical Research Institute of Cordoba (IMIBIC), University of Cordoba, Spanish Network for Research of Excellence in Obesity (CIBEROBN), Córdoba, Spain

Monica Lopez Rodriguez

Hospital Universitario Ramón Y Cajal, Instituto Ramón y Cajal de Investigación Sanitaria (IRYCIS), Madrid, Spain

Parul Jayakar

Nicklaus Children’s Hospital, Miami, FL

Allan Lund

Centre for Inherited Metabolic Diseases, Copenhagen University Hospital, Rigshospitalet, and Department of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark

Galit Tal

Metabolic Clinic and Pediatric Department “B”, Ruth Rappaport Children’s Hospital, Rambam Health Care Campus, Haifa, Israel; Rappaport Faculty of Medicine, Technion-Israel Institute of Technology, Haifa, Israel

Jose Elias Garcia-Ortiz

Division of Genetics, Centro de Investigación Biomédica de Occidente (CIBO) del Instituto Mexicano de Seguro Social (IMSS), Guadalajara, Mexico

Karolina Stepien

Adult Inherited Metabolic Diseases, Northern Care Alliance National Health Service (NHS) Foundation Trust, Salford Royal Organization, Salford, UK

Carolyn Ellaway

Sydney Children's Hospital Network, Sydney, Australia

Walla Al-Hertani

Boston Children’s Hospital, Harvard Medical School, Boston, MA

Roberto Giugliani

Federal University of Rio Grande do Sul (UFRGS), Hospital de Clinicas de Porto Alegre (HCPA), National Institute of Population Medical Genetics (INAGEMP), Diagnósticos da América S.A. (DASA) and Center for Comprehensive Care and Training in Rare Diseases (CASA DOS RAROS), Porto Alegre, Brazil

Sara Cathey

Greenwood Genetic Center, Greenwood, SC

Julia Hennermann

Villa Metabolica, University Medical Center Mainz, Mainz, Germany

Christina Lampe

Center for Pediatric and Adolescent Medicine, Giessen University Hospital, Giessen, Germany

Markey McNutt

The University of Texas Southwestern Medical Center, Dallas, TX

Florian Lagler

Institute for Inherited Metabolic Diseases & Department of Pediatrics, Paracelsus Medical University, Salzburg, Austria

Maurizio Scarpa

Regional Coordinating Center for Rare Diseases, University Hospital Udine, Italy

Vernon Sutton

Baylor College of Medicine & Texas Children’s Hospital, Houston, TX

Nathalie Guffon

Reference Centre for Inherited Metabolic Diseases (CERLYMM), Hospices Civils of Lyon (HCL), Lyon, France