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Table 1 Details of expert team members

From: A standard set of outcome measures for the comprehensive assessment of osteogenesis imperfecta

Role

Name

Surname

Title

Location

Prof. background

Additional perspective

Emailadress

Institute

Lead Team

Anton FRANKEN

Franken

MD, PhD

Zwolle, the Netherlands

Endocrinologist

 

a.a.m.franken@isala.nl

Isala Hospital

Lead Team

Guus JANUS

Janus

MD, PhD

Zwolle, the Netherlands

Orthopaedic Surgeon

 

a.j.m.janus@isala.nl

Isala Hospital

Lead Team

Wouter NIJHUIS

Nijhuis

MD

Utrecht, the Netherlands

Orthopaedic Surgeon

 

W.H.Nijhuis-2@umcutrecht.nl

University  Medical Center Utrecht

Lead Team

Ralph SAKKERS

Sakkers

MD, PhD

Utrecht, the Netherlands

Orthopaedic Surgeon

OIFE Medical Advisory Board Member

R.Sakkers@umcutrecht.nl

University Medical Center Utrecht

Lead Team

Marjolein VERHOEF

Verhoef

MD, PhD

Utrecht, the Netherlands

Rehabilitation Physician

 

M.Verhoef-19@umcutrecht.nl

 University Medical Center Utrecht

Lead Team (Project Mgt)

Dagmar MEKKING

Mekking

PhD

The Hague, the Netherlands

Project Manager

Director Care4BrittleBones Foundation, OI-community

dagmar.mekking@care4brittlebones.org

Care4BrittleBones Foundation

Expert Team

Kara AYERS

Ayers

PhD

Cincinnati, USA

Psychologist

Vice-President OIF Board of Directors, OI-community

Kara.Ayers@cchmc.org

Cincinnati Children's Hospital Medical Center

Expert Team

Chantal DAMAS

Damas

BSc

Montreal, Canada

Physiotherapist

Coordinator Center of Excellence

CDamas@shrinenet.org

Shriners Hospitals for Children, Montreal

Expert Team

Lars FOLKESTAD

Folkestad

MD, PhD

Odense, Denmark

Endocrinologist

OIFE Medical Advisory Board Member, Care4BrittleBones Foundation Advisory Board Member

lfolkestad@health.sdu.dk

University of Southern Denmark

Expert Team

Antonella FORLINO

Forlino

PhD

Pavia, Italy

Biochemistry, Genetics

OIFE Medical Advisory Board Member, Care4BrittleBones Foundation Advisory Board Member

antonella.forlino@unipv.it

University of Pavia

Expert Team

Paolo FRASCHINI

Fraschini

MD

Milano, Italy

Rehabilitation Physician

 

paolofraschini@gmail.com

Rizzoli Institute Bologna Vele affliaties

Expert Team

Claire HILL

Hill

PhD, MCSP PGCE

Sheffield, UK

Physiotherapist

OIFE Medical Advisory Board Member

clairehill3216@gmail.com

Sheffields Children's NHS trust foundation

Expert Team

Richard KRUSE

Kruse

DO, MBA

Delaware, USA

Orthopaedic Surgeon

 

Richard.Kruse@nemours.org

Nemours/Alfred Dupont Hospital for children

Expert Team

Lena LANDE WEKRE

Wekre

MD, PhD

Oslo, Norway

Rehabilitation Physician

OIFE Medical Advisory Board Member, Care4BrittleBones Foundation Advisory Board Member

LENALW@sunnaas.no

TRS National Resource Center for Rare Disorders, Sunnaas Rehabilitation Hospital

Expert Team

Lieve MICHIELS

Michiels

PhD

Belgium

not applicable

Board member ZOI, Belgium OI Association, OI Community

dillen.michiels@skynet.be

ZOI (Flemish OI Association)

Expert Team

Kathleen MONTPETIT

Montpetit

MScOT

Montreal, Canada

Occupational Therapist, retired

Advisor Care4BrittleBones Foundation

kathleenmontpetit@yahoo.ca

Care4BrittleBones Foundation

Expert Team

Leonardo PANZERI

Panzeri

not applicable

Italy

not applicable

President Italian OI Association AS.IT.O.I., OI Community

leonardo.panzeri@asitoi.it

AS.IT.O.I. (Italian OI Association)

Expert Team

Valerie PORQUET-BORDES

Bordes

MD, PhD

Toulouse, France

Pediatrician

Care4BrittleBones Foundation Advisory Board Member

porquet-bordes.v@chu-toulouse.fr

CHU de Toulouse

Expert Team

Frank RAUCH

Rauch

MD, PhD

Montreal, Canada

Pediatrician

 

frank.rauch@mcgill.ca

Shriners Hospitals for Children, Montreal

Expert Team

Jean-Pierre SALLES

Salles

MD, PhD

Toulouse, France

Physiopathologist

 

salles.jp@chu-toulouse.fr

CHU de Toulouse

Expert Team

Oliver SEMLER

Semler

MD

Cologne, Germany

Pediatrician

OIFE Medical Advisory Board Member, Care4BrittleBones Foundation Advisory Board Member, OI-community

joerg.semler@uk-koeln.de

University of Cologne, Department of Paediatrics

Expert Team

Jony SUN

Sun

MSW, Project Manager

Beijing, China

Social Worker

China-Dolls Center for Rare Disorders (CCRD), OI Community

82,456,214@qq.com

China-Dolls Center for Rare Disorders(CCRD)

Expert Team

Michael TO

To

MD, PhD

Hong Kong SAR and Shenzhen, China

Orthopaedic Surgeon

 

mikektto@hku.hk

The University of Hong Kong—Shenzhen Hospital

Expert Team

Laura TOSI

Tosi

MD

Washington, USA

Orthopaedic Surgeon

OIF Medical Adviory Board

LTOSI@childrensnational.org

Children’s National Hospital, Washington, DC

Expert Team

Yangyang YAO

Yao

MD

Shandong Provincial Hospital, China

Orthopaedic Surgeon

 

15,165,313,344@126.com

Shandong Provincial Hospital

Expert Team

Eric Hiu Kwong YEUNG

Yeung

MSc, BSc

Hong Kong SAR and Shenzhen, China

Physiotherapist

 

ericyhk@hku.hk

The University of Hong Kong—Shenzhen Hospital

Expert Team

Lidiia ZHYTNIK

Zhytnik

PhD

Tartu, Estonia

Genetics, Biomedicine

OIFE Medical Advisory Board Member, Care4BrittleBones Foundation Advisory Board Member, OI-community

Lidiia.zhytnik@ut.ee

Tartu University Hospital

Expert Team

Maria Carola ZILLIKENS

Zillikens

Prof. MD, PhD,

Rotterdam, the Netherlands

Endocrinologist

 

m.c.zillikens@erasmusmc.nl

University Medical Center Erasmus Rotterdam