Compendium of Health Telematics Projects 94-98 (Draft)


	Updated: Aug 26, 1998
This is the most recent structured* information on this project. Complementary data can be found on previous documents*
MARGRITE MARrow Graft : Integrated Telematics in Europe

Project code:	G7-78970
Project value:	360.0 KECU
EC contribution:	300.0 KECU
Number of partners:	0
Number of countries:	0
Duration:	36 months
Starting date:	Jan 1, 96

Contact:	Norbert-Claude Gorin EBMT rue de l'Ecole de Medecine, 15 75003 Paris France
Tel:	33 1 40 46 95 07
Fax:	33 1 40 46 96 07
E-mail:	ebmtcigm@worldnet.fr
Web Site:	www.citi2.fr/margrite

Overview

Bone marrow transplantation techniques have proven to be an essential tool for the treatment of leukaemia, especially in children. Due to the strong constraints of tissue compatibility, only a major pool of potential donors can provide without loss of time, the best compatible graft. By themselves, National Bone Marrow Donor databases managed by the Bone Marrow Donor Registries are unable to provide a sufficient number of donors. The first objective of MARGRITE is to assure interoperability and real time telematic interconnectivity of the various national bone marrow donor and patient’s European data banks (EBMT), functioning within the European regulation concerning confidentiality, data protection in particular. MARGRITE represents a feasibility study in the access for the users which are grafting physicians to these data banks. Thanks to this access, the therapeutic choice will be optimised. Technically speaking, MARGRITE is strongly related to other telematics applications projects notably those dealing with facilitating co-operative working of Health professionals, in particular oncologists. In addition, the MARGRITE project constitutes an important European Component of the world-wide telematics interconnection of bone marrow donor and patient banks, as recommended in the framework of the G7 Global Health Care applications project.

Purpose and objectives

The objective of the MARGRITE project is triple :

to establish interoperability and telematics interconnectivity between various national and international Donor Registries in order to find, the best donor within the shortest period of time, for patients world-wide in the field of unrelated haematopoietic stem cell transplant.
to establish feasibility in the access of grafting physicians to national and European data bases of blood and marrow graft cases. Querying the European MARGRITE data base, containing data for about 40 000 grafts, will help grafting physicians to assess transplant outcome for common as well as especially rare transplant indications.
to constitute a resource for planning protocols and clinical trials. Examples include providing preliminary data regarding efficacy of some transplant procedures and incidences of transplant outcomes to target promising therapies for clinical testing and estimate samples of European size for specific studies.

Results

Using Internet based technology, MARGRITE will be able to help find, world wide, the most suitable registered unrelated donor within the shortest period of time, for patients needing an haematopoietic stem cell transplant.

Physicians having access to MARGRITE, will be able to retrieve case records concerning marrow grafts, either as a reference in their therapeutic choice, or as a data intervening in the definition of protocols and clinical trials. They will be helped in this by the connection with resulting products from other projects, as PROMPT and MACRO, EUROPATH, and other ACTION cluster projects, made possible through collaborative work.

List of deliverables

1996

Indicators of success (06/1996/N/A) Statistical Analysis in the MARGRITE Project (06/1996/N/A)

1997

Interconnection between EMDIS and international registries/Telematic Connection and Organisation between existing Bone Marrow Registries (02/1997/02/1997/N/A) Software requirement definition for bone marrow clinical network (10/97/N/A/10/1997)

1998

Functional demonstrator for clinical documentation and decision support system (09/1998/N/A) Report on local validation (user level) (12/1998/N/A) Implementation strategies (12/1998/N/A)

List of participants

Name:
Organisation:	EBMT European co-operative group for Blood and Marrow Transplant
Address:	Institut des Cordeliers 15, rue de l’Ecole de Médecine F75006 Paris
Country:	France
Tel:	+33 1 40 46 95 07
Fax:	+33 1 40 46 96 07
E-mail:	ebmtcigm@worldnet.fr

Name:
Organisation:	CITI2
Address:	CITI2 Université René Descarres - Paris V 45, rue des Saints-Pères F75006 Paris
Country:	France
Tel:	+33 1 44 50 26 11
Fax:	+33 1 42 96 34 97
E-mail:	Ihbdev@citi2.fr

Name:
Organisation:	FGM France Greffe de Moëlle
Address:	Pavillon Lailler 1, av. Claude Vellefaux F75010 Paris
Country:	France
Tel:	+33 1 42 49 40 70
Fax:	+33 1 48 03 02 02
E-mail:	raffoux@emdisf.fgm.fr

Name:
Organisation:	BMDW
Address:	BMDW Europdonor Foundation Rijnsburgerweg, 10 University Hospital Leiden NL2333A Leiden
Country:	The Netherlands
Tel:	+31 71 268 002
Fax:	+31 71 210 457
E-mail:	zanden@rullf2.leidenuniv.nl

Name:
Organisation:	EFG Etablissement Français des Greffes
Address:	Hôpital des Quinze-Vingt 28, rue de Charenton F75571 Paris Cedex 12
Country:	France
Tel:	+33 1 44 67 55 68
Fax:	+33 1 44 67 55 61



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MARGRITE

MARrow Graft : Integrated Telematics in Europe

Overview

Purpose and objectives

Results

List of deliverables

List of participants