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Information Technology For Stem Cell Registries Network

Objective

Bone Marrow Transplantation of hematopoietic stem cells is used for therapy of malignant diseases and for atomic power accident victims. Registries of volunteer bone marrow donors and banks of stem cells (cord blood units) are organised. The number of donors and conserves (at the stem cell banks) must be very high, and various ethnic groups must be included to achieve a genetic match between donor and recipient. Thus, it is of common interest to have a network of donor registries and stem cell banks in Central European Countries.

OBJECTIVES:
Dissemination of best practice principles will result in participation of national networks in European activities BMDW, EDS, EMDIS, NETCORD.

Best practice principles will be introduced also for sharing of European standards, good laboratory practice, and quality control of typing procedures. This will result in higher efficiency and quality, shorter waiting times and reduced costs. Commercial exploitation will be passed to the industrial partners. Experts from EUROPDONOR are the guarantee for application of appropriate measures.

Work description:
Central European National Registers participate in pan-European organisations, primarily in the well established organisation of Bone Marrow Donors Worldwide (BMDW of more than 6 million HLA antigen typed donors).

Moreover there is the EDS system (Paris), which facilitates connection and exchanges of information between individual registers.

Thirdly, as a pan-European effort the system of EMDIS is approaching its completion and will represent an improvement of what the EDS system can provide. These efforts assure an average patient for a high chance for a suitable (HLA identical) matched unrelated donor.

Recently, two new types of stem cell transplantation are emerging:
(a) from placental (cord) blood;
(b) from peripheral blood. [Cord blood and placental blood are synonymous].

Thus: there are three sources of stem cells:
(1) bone marrow from volunteer donors
(2) peripheral blood stem cells from volunteer donors
(3) stored cord blood units.

The first and second method originate from registers of donors, the third method is procured via banks of stored (cryo preserved) stem cells. Obviously, stem cell banks are at their beginnings of broad development.

The objective of this project is to support further development of the above-sketched efforts in the area of Central Europe. This is dictated by the need to have a high number ethnically different stem cell sources.

The following work will be done:
.Facilitate local development of registers by establishing networks between the various national components (HLA typing labs, clinical transplant centres, donor recruitment centres, diagnostic and control laboratories).
.Effectuate participation and inclusion of national networks into the above-mentioned pan-European networking.
.Introduce standardised nomenclature for usage of genetic components applied for optimal selection of donor/recipient pairs.
.Concentrate to implementation of best practice and standard operation procedures (GOOD LABORATORY PRACTICE).
.Concentrate to implementation of EMDIS work for European networking (introduce and interconnect national CE registers with EMDIS).
.Implement application to NETCORD standard for stem cell banking.

Milestones:
Regional networks for stem cells transplantation will effectively integrate into European networks.
.Implementation of standardised nomenclature, international quality control and good laboratory practice will be used at national centres.
.International communication standards like EMDIS will be implemented.
.Dissemination and use of the outcome of the project at all participant sites is one of the goals.
.Best practice for appropriate usage of IT will result in greater efficiency, higher quality and reduced costs at the respective national centres.
.The participation of experts from EUROPDONOR is the guarantee for appropriate measures to be taken in the individual CE centres.

Funding Scheme

ACM - Preparatory, accompanying and support measures
Leaflet | Map data © OpenStreetMap contributors, Credit: EC-GISCO, © EuroGeographics for the administrative boundaries

Coordinator

STICHTING EUROPDONOR FOUNDATION
Address
Albinusdreef 2
2333 ZA Leiden
Netherlands

Participants (7)

BLOOD TRANSFUSION CENTRE OF SLOVENIA
Slovenia
Address
Slajmerjeva 6
1000 Ljubljana
CENTRAL EUROPE TRANSPLANT FOUNDATION
Netherlands
Address
Lohengrinstraat 56
1183 RG Amstelveen
CZECH BONE MARROW REGISTRY, INSTITUTE OF CLINICAL AND EXPERIMENTAL MEDICINE, PRAGUE
Czechia
Address
Videnska 1958/9
140 21 Praha
LUDWIK HIRSZFELD INSTITUTE OF IMMUNOLOGY AND EXPERIMENTAL THERAPY, POLISH ACADEMY OF SCIENCES
Poland
Address
Rudolf Weigl 12
53-114 Wroclaw
NATIONAL INSTITUTE OF HAEMATOLOGY AND IMMUNOLOGY
Hungary
Address
Daroczi 24
1519 Budapest
SLOVAK PLACENTAL HAEMATOPOETIC STEM CELL REGISTRY EUROCORD-SLOVAKIA
Slovakia
Address
Dubravska Cesta 9
84104 Bratislava
VILNIAUS UNIVERSITETAS
Lithuania
Address
Universiteto G. 3
Vilnius