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 Updated on: Jan 9 2014

Establishment of an internet-based virtual myeloma-network

 

Subject

A high priority in the first months of the networks existence was to establish an Internet resource directly linking the management group to the partner laboratories and clinics (and vice versa) as well as connecting the partners. This was and still is essential for the flow of data to the data banks and the dissemination of information to all participants in an efficient and timely manner.

 

Preview of Programme Proposed

We have established a "EMN Home Page": www.europe-myeloma.org, in order to have a myeloma platform for communication among clinicians, researchers, companies and patients.

 

This also includes a means for holding virtual conferences and for safely transmitting data between centers and the databases. The resource are grouped into 4 areas;

 

1.  Information for EMN members (restricted access)

• clinical trial protocols and report forms
guidelines for EMN procedures (e.g. minimal data 
  acquisition, initiating a novel drug trial etc.)
• standard Operating Procedures for laboratory work
  (to be developed in the workpackages)
• online documentation of all activities and resources within EMN.

 

2.  Public and patient information

• information on the EMN structure and function
• information on all EMN member centers and research groups
• updates describing the progress of the work
• patient education documents 
• links to patient groups
• resources for medical education, virtual training courses
• EMN Guidelines for diagnosis and treatment of MM


3.  Safe transfer of data

• encrypted data transfer
• online data entry for case report forms 
• online data entry for clinical specimens

 

4.  Communication

• virtual conferences, allowing communication without delay
• Virtual workspaces to link groups cooperating in a workpackage
• virtual Reference laboratories for re-evaluating critical results of
  
laboratory investigations or diagnostic imaging
• a discussion forum for critical/unclear clinical cases
• a discussion forum for critical laboratory techniques 
 
 

This work is outsourced to a company. The network provides a detailed specification of the site required.

 
Deliverables and Cooperation

  • Internet resources to guarantee the flow of information among partners
  • European guidelines for clinical diagnostic procedures, recommendations for prognostic evaluation and standard operating procedures for therapy and response evaluation
  • a European set of case report forms for epidemiological data acquisition and prospective clinical trials
  • compatible European-based clinical databases and statistical procedures
  • an "EMN clinical trial portfolio" of highly selected therapy related issues
  • EMN News.

Secr. Hans E. Johnsen | Depart. of Haematology | Aalborg University Hospital | Sdr. Skovvej 15 | DK-9000 Aalborg | Denmark | T:+45 9766 3871 | F:+45 9766 6369