The TREAT-NMD Global Database Oversight Committee (TGDOC) is composed of representatives of the TREAT-NMD network plus representatives of patient organisations and each national registry. The committee is chaired by the TREAT-NMD activity leader.

The TGDOC is responsible for reviewing all requests for data from the global database. This is intended to be a streamlined and rapid procedure in order not to delay approval. Requests will be responded to within a set time period of two weeks.

A list of all committee members is provided below, together with their disclosure statements.

Explanatory note: Examples of financial interest/arrangements to be disclosed include employment, grant support, honoraria, equity, ownership and royalties from a commercial organization within the last 3 years (after 01-01-2006) and valued at more than 2,000 Euro.

Personal Information of OC member

Name: Svetlana Artemieva 
Affiliation/Employer: Moscow Regional Children Psychoneurological Hospital
Role in relation to global registries: Curator of Moscow DMD and SMA Registry

Disclosure Statement:

I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Alexander N. Baranov
Affiliation/Employer: Lab. For Prenatal Diagnosis, D.O. Ott Research Institute of Obstetrics and Gynecology, Russian Academy of Medical Sciences
Role in relation to global registries:Curtaor of  DMD and SMA Registry in St Petersberg

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Christophe Béroud
Affiliation/Employer: University of Montpellier, Montpellier University Hospital, INSERM U827, FR
Role in relation to global registries: TREAT-NMD work package leader for patient registries

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Fabrizia BIGNAMI
Affiliation/Employer: EURORDIS
Role in relation to global registries: In charge of EURORDIS advocacy activities regarding patients’ registries for rare diseases

Disclosure Statement
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Ria Broekgaarden
Affiliation/Employer: VSN
Role in relation to global registries: IPA is co owner of a global survey/registry of data.

Disclosure Statement: 
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member:
Name: Filippo Buccella
Affiliation/Employer: Parent Project onlus
Role in relation to global registries: Coordinator 

Personal Information of OC member
Name: Nick Catlin
Affiliation/Employer: Action Duchenne
Role in relation to global registries: Registry Manager

Disclosure Statement
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Hugh Dawkins
Affiliation/Employer: Office of Population Health Genomics, Public Health Division, Department of Health, Western Australia
Role in relation to global registries: Curator for Australian National DMD Registry

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Ole Gredal
Affiliation/Employer: The Rehabilitation Centre for Neuromuscular Diseases
Role in relation to global registries: Curator for the Danish TREAT-NMD DMD and SMA Registry

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Kevin Flanigan
Affiliation/Employer: University of Utah
Role in relation to global registries: We have established a registry of DMD Patients

Disclosure Statement
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

 Role:

For what organisation?

i) PTC Inc.: Site Principal Investigator for Clinical Trial; Advisory Board (Honorarium)

ii) AVI Inc.: Advisory Board (Honorarium)

ii) Prosensa Inc.: Advisory Board (Honorarium)

Personal Information of OC member
Name: Pat Furlong
Affiliation/Employer: Parent Project Muscular Dystrophy (PPMD).
Role in relation to global registries: Provide financial support for DuchenneConnect.org

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Serap İnal
Affiliation/Employer: Prof.Dr. PT; Istanbul University, Turkey.
Role in relation to global registries: Patient Registry in Turkey. 

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Jacqueline M. Jackson
Affiliation/Employer: Indiana School of Medicine
Role in relation to global registries: Oversight Committee, International Spinal Muscular Atrophy Patient Registry, USA.
 
Disclosure Statement
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Dr Pierre-Yves Jeannet
Affiliation/Employer: Centre Medical Universitaire Vaudois, Lausanne, Switzerland
Role in relation to global registries: Swiss National Registry

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Anna Kaminska
Affiliation/Employer: Medical University of Warsaw, Department of Neurology
Role in relation to global registries: Coordinator

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: A. Ayse Karaduman
Affiliation/Employer: Hacettepe University
Role in relation to global registries: DMD and SMA registry curator in Ankara Turkey
 
Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Dr. Veronica Karcagi
Affiliation/Employer: Biologist, Human Geneticist, PhD; National Institute of Environmental Health (NIEH), Hungary
Role in relation to global registries: Database Curator

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Dr. Janbernd Kirschner
Affiliation/Employer:
Klinik II: Neuropädiatrie und Muskelerkrankungen
Zentrum für Kinder- und Jugendmedizin
Universitätsklinikum Freiburg
Mathildenstraße 1
D - 79106 Freiburg 

Personal Information of OC member
Name: Lawrence Korngut
Affiliation/Employer: University of Calgary
Role in relation to global registries: National Prinicipal Investigator, Canadian Neuromuscular Disease registry

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Jaana Lähdetie
Affiliation/Employer: Turku University Central Hospital
Role in relation to global registries: Head of Finnish TREAT-NMD Patient Registry

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Hanns Lochmüller
Affiliation/Employer: University of Newcastle, UK
Role in relation to global registries: TREAT-NMD activity leader for patient registries; chair of oversight committee

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Vitaliy Matyushenko
Affiliation/Employer: President of Charitable Foundation “Children with SMA”, Ukraine
Role in relation to global registries: Curator national DB  

Personal Information of OC Member
Name: Violeta Mihaylova
Affiliation/Employer: University Hospital “Alexandrovska”, Department of Neurology, Sofia
Role in relation to global registries: Bulgarian TREAT-NMD Registries
 
Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Vedrana Milic Rasic
Affiliation/Employer: Clinic for Child Neurology and Psychiatry, University of Belgrade
Role in relation to global registries: Curator of Serbian DMD and SMA Registries

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Vanessa Rangel Miller
Affiliation/Employer: DuchenneConnect / Emory University
Role in relation to global registries: Coordinator and genetic counsellor for DuchenneConnect.
 
Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Ian Murphy
Affiliation/Employer: Self Employed
Role in relation to global registries: Organiser
 
Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Harumasa Nakamura
Affiliation/Employer: National Center of Neurology and Psychiatry (NCNP)
Role in relation to global registries: Responsible for DMD patient registry in Japan.
 
Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Marie Cjristine Ouillade
Affiliation/Employer: AFM, France
Role in relation to global registries: Patient Association

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: W. Ludo van der Pol
Affiliation/Employer: Dpt. Neurology, Spieren voor Spieren Center for Pediatric Neuromuscular Disorders, University Medical Centre Utrecht
Role in relation to global registries: Curator of Dutch SMA Registry

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Pascale Saugier-Veber
Affiliation/Employer: University Hospital of Rouen and Faculty of Medicine of Rouen, France
Role in relation to global registries: Molecular curator of the SMA Database.

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: M. Rosário dos Santos
Affiliation/Employer: Centro de Genética Médica J. Magalhàes, I.N.S.A
Role in relation to global registries: Curator of National Registry 

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Inge Schwesenz
Affiliation/Employer: SMA Europe
Role in relation to global registries: Curator of German DMD and SMA Registries

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Thomas Sejersen
Affiliation/Employer: Karolinska Institute / Karolinska University Hospital
Role in relation to global registries: Oversight Committee Member
 
Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Eduardo Tizzano
Affiliation/Employer: Department of Genetics, Hospital Sant Pau, Barcelona, Spain
Role in relation to global registries: Coordinator of SMA registry in Spain.

Personal Information of OC member
Name: Isabela Tudorache
Affiliation/Employer: Parent Project Romania
Role in relation to global registries: Coordinator of Romanian DMD Patient registry

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Sylvie Tuffery-Giraud
Affiliation/Employer: Montpelier 1 University, INSERM U827, France.
Role in relation to global registries: DMD Registry Curator

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Peter Van den Bergh
Affiliation/Employer: Université catholique de Louvain, Brussels, Belgium.
Role in relation to global registries: Coordinator of the Belgian Neuromuscular Disease registry and the Belgian TNMD DMD database.

Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Jan Verschuuren
Affiliation/Employer: Leiden University Medical Center (LUMC)
Role in relation to global registries: Curator of the Dutch DMD/BMD registry.

Disclosure Statement:
I and/or my spouse/partner have a financial interest/arrangement with one or more organization(s), including but not limited to the organization(s) supporting this activity, that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

Further details:
Self or Spouse? Self
Name of Organization: Prosensa
Nature of relevant financial relationship: Trial support in 2007
What was received? Financial support for execution of the antisense trial with PRO-051 was given to the LUMC.
For what role? Principal Investigator

Personal Information of OC member
Name: Petr Vondracek
Affiliation/Employer: Department of Paediatric Neurology, University Hospital Brno, Czech Republic.
Role in relation to global registries: Curator of the national DMD/BMD registry.
 
Disclosure Statement :
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.

Personal Information of OC member
Name: Simon Woods
Affiliation/Employer: Newcastle University UK
Role in relation to global registries: Oversight Committee member: offering expertise in ethics and governance.
 
Disclosure Statement:
I and/or my spouse/partner have no financial interest with any organization that could be perceived as a real or apparent conflict of interest in the context of the subject of this activity.

I am not a member of a steering committee or advisory board or equivalent body, or an investigator, for an industry-sponsored clinical trial / pharmaceutical company.