Promoting Optimisation, Safety, Experience sharing and quality Implementation for Donation Organisation and Networking in Unrelated Haematopoietic Stem Cell Transplantation in Europe

Institut National de la Santé et de la Recherche Médicale (Inserm) – U558

Country: France

This partner is a research unit of the National institute of Health and Medical Research (Inserm – a public structure) entitled: «Epidemiology and analyses in Public Health : risks, chronic diseases and handicaps». The unit is structured in 5 teams, having in charge the coordination of POSEIDON. This team is called : “Genomics, health, society: multidisciplinary analyses and decision in public health”. The team brings together competencies in public health, ethics, health law and forensic medicine, health economics, sociology of sciences, immunogenetics, population genetics, and genetic epidemiology. Its core activities involve a multidisciplinary approach of the above subjects and their link with HSC donation. This partner also coordinated the MADO project (lien vers la page du projet mado). The unit is in charge of Work Packages 1 and 3: Coordination and evaluation of the project.

Universidad del Paìs Vasco (EHU)

Country: Spain

In 1993 the BBV foundation, the Provincial Government of Biscay and the University of  Deutso signed the agreement to establish The Chair of Law and Human Genome. In 1997 the University of The Basque Country (Euskal Herriko Unibersitatea) joined the Chair which has been from its onset, and is still today, presided by Professor Carlos Maria Romeo-Casabona.
The achievement of the objectives which were the basis of its creation have been the permanent criteria for the planning of its works, and now, after almost thirteen years, continue to provide the basis for this Institution.
The Chair aims to be an Institution that fosters a rigorous and cross disciplinary analysis of the legal implications of the advances in molecular biology. The benefits of its work is made available for the University Community, professionals of different fields and society at large.
The Chair is in charge of Work Package 4: Legal issues in HSC donation.

The European Federation for Immunogenetics (EFI)

Non profit organization

EFI was formally created in March 1985 and counts today about 700 individual members in 45 European countries.

The aims of EFI as summed up in its Constitution are:
To advance the development of Immunogenetics in Europe as a discipline of medicine and support research and training.
To provide a forum for exchange of scientific information and to reinforce the skills and knowledge of young scientists and others working in the field.
To create a formal organisation of workers in the field of immunogenetics, histocompatibility testing and transplantation.
To elaborate recommendations for standardisation of techniques, quality control and criteria for accreditation and to support their implementations.
To promote the organisation and use of immunogenetic data bases.
To develop relations with similar organisations.
EFI is in charge of Work Package 6 : Quality and safety aspects of immunogenetics for HSCT in Europe.

Oslo University - Faculty of medicine, section of Medical Ethics (UIO)

Country : Norway

One of the central fields of activity in recent years has been to establish and provide working guidelines for clinical ethics committees at Norwegian Hospitals, a mandate issued by the Government.
The section of Medical Ethics also arranges regular symposiums focusing on problems related to the normative bases of medicine and research ethics.
A third topic of investigation aims at providing an ethically informed evaluation of resource allocation as a tool for laying the ground for equitable health care policies. In order to enhance a wide-ranging and comprehensive approach, the section of Medical Ethics has recruited research fellows from a variety of academic and professional backgrounds (theology, philosophy, political science, medicine, anthropology, nursing science and engineering).
The section is currently involved in several other international research projects, some of which are financed by the EU commission:
- EuroGentest (2005-2010) aims at harmonizing genetic testing and developing recommendations for health care personnel involved in genetic counseling.
- STREP (specific targeted research or innovation project, 2006-2009) addresses the ethical, legal and social problems of population banking and forensic DNA databases and the overarching governance aspects of biobanks.
The recruitment, allocation and optimization of stem cell transplantation (POSEIDON), particularly as regards practices in new EU member states, represents a field of investigation which fits into the Section of Medical Ethic’s overall commitment to promote just and morally robust health care policies. Of special interest are the ethical dilemmas and potential clashes between minority populations’ rights and the obligations of the majority to ensure that members of these ethnic minorities are accorded equal access to bone marrow therapy.
Ethical aspects covered by the project will be considered throughout all the work packages under the leadership of this partner.

Centre National de la Recherche Scientifique (CNRS) – Gremaq

Country: France

The Gremaq (Research Group in Mathematical and Quantitative Economy) was created in 1981 and is affiliated with the University of Social Science in Toulouse. As of 1995 it is considered a research unit of the French National Center of Scientific Research (CNRS). It’s personnel is comprised of over 150 researchers and it’s main activities include public economy, industrial economy, networking economy, finance as well as microeconomics and econometrics. The group has already produced preliminary works during the MADO project and is in charge of Work Package 7: Economic and statistical tools for optimal implementation of efficient HSC registries.

Tudástársadalom Alapítvány (TSA)

Country: Hungary

The Knowledge Society Foundation was created with the aim of studying the consequences of spreading information and communication technologies, and their impact on community organisation, knowledge transfer and culture.

The main themes addressed by the foundation are the following:
- Communication theory and history
- Cultivation of science and knowledge transfer.
- Ideologies, self-images and cultures in the context of new communication forms
- The effect of the technological shift and medialised value transmission and interest promotion on social programs
- Knowledge transfer as reformed by information and communication technologies

The foundation is in charge of Work Package 5: Donation promotion and quality issues.

Országos Vérellátó Szolgálat (http://www.ovsz.hu/hu/)

Country: Hungary
The National Medical Center is based in Budapest.
The Center is in charge of Work Package 9: Education and training.

Hungarian National Blood Transfusion Service, Transplantation Immunogenetics (HNBTS)

Country: Hungary

This partner belongs to the Hungarian National Blood Transfusion Service since September 2007; consists of an immunogenetic laboratory, the office of the National Kidney Transplantation Waiting List and the Hungarian Bone Marrow Donor Registry. The mother Institute - The Hungarian National Blood Transfusion Service Centre in Budapest is responsible (as a competent authority) for the quality and safety of blood donation, blood product management and transfusion medicine in Hungary. Major tasks of the Hungarian National Blood Transfusion Service are the followings:
• Preparation of methodological descriptions, standards, protocols, data collection and evaluation in transfusiology.
• Management and registration of national stock of blood products, by means of the network of logistics and information.
• Management of Blood donor recruitment, investigation, blood collection and all other tasks of preparation, storing and distribution of blood products.
• Quality controls, validation in all fields of laboratory methodology, blood collection and preparation.
• Teaching, training and applied research related to transfusiology, haematology and immunology.
This partner has participated in the MADO project as a NAS country representantive (National Medical Center). Its major task in the MADO project was to develop recruitment strategies for the gypsy minorities to supplement the donor pool of the Hungarian Bone Marrow Donor Registry. The unit is in charge of Work Package 9: Education and training; and participates in WP 4 and WP5.

Agence de la Biomédecine (AB)

Country: France

Created in 2004 to replace the Etablissement Français des Greffes,  following the major french bioethical law of the 6th of August 2004, the organisation has a large panel of core activities. Including:

- Organs, tissues, and cells donation and transplantation
- Managing national waiting lists of patients awaiting organ transplantation.
- Allocation of organs.
- Managing the national refusal registry.
- Organization of tissue banking activities
- Advising the ministry of Health on the elaboration of regulations
- Evaluation of procurement and coordination activities
- Promotion and funding or research activities  in the field of procurement and transplantation
- Information about donation and transplantation activities and health related topics to:
    - Health Administrations.
    - Procurement and transplantation Professionals.
    - Foreign Transplant Organizations.
    - Patients Associations.

- Information to the General public.
- Promotion and development of training courses.
- International Cooperation.

The Agence is in charge of Work Packages 2 & 8: Dissemination of the results and Synthesis and
interdisciplinary integration.