Registry

The Regulations of Eastern Mediterranean Bone and Marrow Transplantation (EMBMT) Registry

Name of the Registry

Eastern Mediterranean Blood and Marrow Transplantation Registry (EMBMT Registry).

 

Purpose

  • To serve as a representation of Eastern Mediterranean Blood and Marrow Transplant Group (EMBMT).
  • To provide the updated status of hematopoietic stem cell transplantation (HSCT) in Eastern Mediterranean countries.
  • To identify and highlight the unique issues of HSCT in the Eastern Mediterranean region.
  • To create original data from Eastern Mediterranean region.
  • To collaborate with other international HSCT registries.
  • To serve as a resource for the health care providers in the field of HSCT for education & training, clinical research, trend analysis, strategic planning, improve an optimize the existing standards of care, comparative analysis and myriad of other uses.
  • To encourage scientific publications and presentations for local, regional and international conferences.

 

EMBMT Central Data Center

The Eastern Mediterranean BMT Registry will be located in the Research Unit of King Faisal Cancer Center, KFSH&RC, Riyadh, Saudi Arabia.

 

EMBMT data management training

The data management training for the Eastern Mediterranean BMT Registry will be offered in Riyadh, Saudi Arabia, by the consensus of the participating members.

 

Operation of EMBMT Registry

  • EMBMT Registry will conduct the Annual Patient Registry and the Annual Transplant Activity Survey.
  • The Regulation and Planning Committee of Eastern Mediterranean BMT Registry steers the registry. The members of the Regulation and Planning Committee of Eastern Mediterranean BMT Registry will be nominated and approved at the Board of Directors of the EMBMT.
  • The Eastern Mediterranean BMT Registry strongly encourages the establishment of the national registries for all EM countries, which participate in the Eastern Mediterranean BMT Registry.
  • The national registry of each country has responsibility to collect the data from centers in its own country and submit the anonymous data to the Eastern Mediterranean BMT Central Data Center.
  • For the countries without national registry, the Eastern Mediterranean BMT Registry may collect the national data from those centers until the national registry is established. The EMBMT Registry will annually report the summarized data to each country. The data accumulated in the Eastern Mediterranean BMT Registry can be sent back as the national data, when the national registry is established.
  • Each country will have completely equal and fair access to utilize the data from the EMBMT registry.

 

Annual Patient Registry

  • The survey items will be decided by the Regulation and Planning Committee of Eastern Mediterranean BMT Registry.
  • Eastern Mediterranean BMT Registry will collaborate with other international HSCT registries for the basic survey items.
  • The national registries will submit the data to the Eastern Mediterranean BMT Registry electronically at least once a year.
  • The centers in countries without national registry can submit the data by website or by paper based common clinical record form (CRF) directly to the Eastern Mediterranean BMT Registry.

 

Application for utilizing the data for research

  • When an investigator wants to utilize the data, he/she submits the plan of the study to the Regulation and Planning Committee of Eastern Mediterranean BMT Registry.
  • If it is approved, he/she will receive the data from the Eastern Mediterranean BMT Registry Central Data Center as well as can access any institutes, asking further information.
  • If the research requires the additional cost (eg. for the supplemental data collection and support for statistical analysis), each applicant should prepare certain budget for his/her own study and its amount would be discussed in each case at the regulation and Planning Committee of Eastern Mediterranean BMT Registry.

 

Annual Transplant Activity Survey

The number of HSCT by indications, donor types, and stem cell sources will be collected using the survey form once a year. The data collection will be performed by the same way as the Annual Patient Registry.

 

Annual Report of EMBMT registry

Eastern Mediterranean BMT Registry will yearly report the progress of the Eastern Mediterranean BMT Registry in the Annual Report of EMBMT.

 

The EMBMT has created the International EMBMT Patient Registry

Currently, the EMBMT Patient Registry is only accepting patients through our designated member institutions. If you would like to become a member institution, please contact the EMBMT at the address below.

A two-page data sheet will be forwarded to investigators who wish to contribute patient's names to the Registry.

The Registry will be located at the EMBMT's Secretariat at the King Faisal Specialist Hospital & Research Centre, Riyadh, Saudi Arabia. Please contact the Group for further information.

EMBMT
Secretariat Office
Oncology Centre, King Faisal Specialist Hospital & Research Centre
P.O. BOX 3354, MBC-64
Riyadh 11211
Saudi Arabia

Phone: 966-1-4647272 Ext. 32408
Fax: 966-1-4423941

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