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How to join?

To join Euromyositis registry you need to provide some basic information and confirmation that ethics requirements have been completed.

The joining procedure includes:

  1. E-mail expressing interest to join which is sent to a member of the Steering Committee, preferably to acting chair-person.
  2. Short CV (maximum 1 page), to certify that the participant has a medical licence and works with myositis patients.

The CV and information about name and institution can be either send by email - OR - entered directly in our web-based join form


If
your application is approved, the following is then required from yourself by the steering committee:

1. Local ethics approval to enter patient data into the electronic register.

2. A data sharing agreement.

3. If applicable, a local material transfer agreement to share sera, DNA or muscle biopsies

 

A template which can be used for an ethics application and data sharing agreement will be provided.


After these forms have been received by the chair of the steering committee, the data sharing agreement will be countersigned by the chair of the steering committee, and you will receive a log in for your hospital.

 

Euromyositis provide access to enter myositis data though web forms or direct transfers.

The individual hospital has only access to its own data. The data are protected by login and password. The transfer of data is encrypted.

The database is hosted on servers in EU controlled and under instruction by the hospitals represented in the Steering Committee (SC) of Euromyositis.

On request we can provide a copy of the data processor agreement between the project and the external providers

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