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Actors and Networks database

The evolving field of gene and cell therapy is supported by a large community of academic, clinical, translational, regulatory and patient organisations. The Actors and Networks database maps these stakeholders in Europe and beyond, their activities, and resources they have produced. 

EuroGCT has developed and compiled this database for those interested in identifying the actors involved at each stage of the pathways bringing gene and cell therapies from lab to clinic. Coming from an academic perspective, our focus is to map information that has not been mapped elsewhere. This includes documenting the various types of interconnected regulators, patient groups actively involved along the pathways, and non-profit organisations devoted to therapy development. In its first iteration, this database does not yet include commercial partners and service providers.

Additional complementary work by other organisations on GCT stakeholders mapping can be found here.

A scientific paper on actors has also been published in Humanities and Social Sciences Communications. You can find its lay summary here.

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Notified Body Coordination Group (NBCG-Med)

Type of Actor:

  • Regulators
  • Medical Devices Entities
  • Medical Device Authorities
  • Supranational Medical Device Authorities

Development Stage:

  • Clinical Research
  • Manufacturing
  • Commercialisation

Notified Body Operations Group (NBOG)

Region/Country:  
  • EU/EEA

Type of Actor:

  • Regulators
  • Medical Devices Entities
  • Medical Device Authorities
  • Supranational Medical Device Authorities

Development Stage:

  • Clinical Research
  • Manufacturing
  • Commercialisation

Office for Personal Data Protection (Úřad pro ochranu osobních údajů) (ÚOOÚ)

Region/Country:  
  • Countries in the EU/EEA
  • Czechia

Type of Actor:

  • Regulators
  • Data Authorities
  • National Data Authorities

Development Stage:

  • Fundamental Research
  • Clinical Research
  • Translational Research
  • Health Data

Office for Personal Data Protection of the Slovak Republic (Úrad na ochranu osobných údajov Slovenskej republiky)

Region/Country:  
  • Countries in the EU/EEA
  • Slovakia

Type of Actor:

  • Regulators
  • Data Authorities
  • National Data Authorities

Development Stage:

  • Fundamental Research
  • Clinical Research
  • Translational Research
  • Health Data

Office of the Data Protection Ombudsman (Tietosuojavaltuutetun toimisto)

Region/Country:  
  • Countries in the EU/EEA
  • Finland

Type of Actor:

  • Regulators
  • Data Authorities
  • National Data Authorities

Development Stage:

  • Fundamental Research
  • Clinical Research
  • Translational Research
  • Health Data

Parent Project Muscular Dystrophy (PPMD)

Region/Country:  
  • USA

Type of Actor:

  • Patient Organisations
  • Regional/Local Patient Organisations

Development Stage:

  • Patient and Public Involvement

Conditions and Diseases:

  • Muscle and Skeletal Diseases

Additional information

PPMD is a nonprofit organization that accelerates research, raises awareness, and improves care for people with Duchenne and Becker muscular dystrophy.

Parkinson's UK (Parkinson's UK)

Region/Country:  
  • UK

Type of Actor:

  • Patient Organisations
  • Regional/Local Patient Organisations

Development Stage:

  • Fundamental Research
  • Clinical Research
  • Patient and Public Involvement

Conditions and Diseases:

  • Parkinson's Disease

Additional information

Parkinson's UK is a research and support charity in the UK, aiming to improve the quality of life for people affected by Parkinson's and find a cure for the condition.

Patent Office of the Republic of Bulgaria (Патентно ведомство на Република България) (BPO)

Region/Country:  
  • Countries in the EU/EEA
  • Bulgaria

Type of Actor:

  • Regulators
  • Patent Offices
  • National Patent Offices

Development Stage:

  • Fundamental Research

Patent Office of the Republic of Latvia (Patentu valde)

Region/Country:  
  • Countries in the EU/EEA
  • Latvia

Type of Actor:

  • Regulators
  • Patent Offices
  • National Patent Offices

Development Stage:

  • Fundamental Research

Patent Office of the Republic of Poland (Urząd Patentowy Rzeczypospolitej Polskiej) (UPRP)

Region/Country:  
  • Countries in the EU/EEA
  • Poland

Type of Actor:

  • Regulators
  • Patent Offices
  • National Patent Offices

Development Stage:

  • Fundamental Research
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