NetSarc-ResOs

Réseaux de référence Cliniques

Sarcomes - GIST - Desmoïdes - Tumeurs osseuses rares

L’ANSM suspend les essais masitinib promus par AB Science. Le GSF-GETO recommande imatinib ou sunitinib en remplacement.

SarcomaBCB charter

SarcomaBCB charter (rules for access and use of data and material)

Access to the SarcomaBCB

Each SarcomaBCB member or associated member should make an account request using the application form available in the SarcomaBCB. An email will be sent to all applicants to acknowledge their request.

The webmaster will validate individual accounts and a second email will be sent to each user whose account has been activated.

Types of users:

1. Group data manager (reading and writing rights at a Group of Centres level): this is usually a clinical research assistant belonging to a group of participating Centres. His (her) role is to collect data from this group of Centres and to enter them in the SarcomaBCB. A group data manager may create new cases, write case annotations and modify existing annotations for the patients managed in his (her) group of Centres. A group data manager may query the database, access individual data of patients managed within their group of Centres and export these data for audit or research purposes. A group data manager may access statistical services provided by the system to perform basic description of the content of the database.

2. Centre data manager (reading and writing rights at a Centre level): may be a clinician, a pathologist, a tissue banker, or any professional authorized by a participating Centre to access, modify and use identified data belonging to their institution. These individuals may create new cases, write case annotations and modify existing annotations for their patients. They may query the database, access individual data of patients managed within their Centre, export these data for audit or research purposes. They may access statistical services provided by the system to perform basic description of the content of the database. There may be one or several data managers per Centre. This (ese) data manager(s) will be responsible for the quality of data entered in the SarcomaBCB.

3. Group member (reading rights at a Group of Centres level): a member is a health professional authorized by a participating group of Centres to access to individual data of patients managed within his/her group of Centres. They are not allowed to create new cases, write annotations and modify existing annotations for their patients and export data. They may access statistical services provided by the system to perform basic description of the content of the database.

4. Centre member (reading rights at a Centre level): a member is a health professional authorized by a participating Centre to access to individual data of patients managed within his/her Centre. They are not allowed to create new cases, write annotations and modify existing annotations for their patients and export data. They may access statistical services provided by the system to perform basic description of the content of the database.

5. Guest visitor: a professional with no patient entered in the SarcomaBCB who should register in the SarcomaBCB website and who may access statistical services provided by the system to perform basic description of the content of the database.

Use of SarcomaBCB data

At anytime, a data manager can export data of patients from his (her) Centre or group according to his (her) level of rights.

To obtain data from another Centre, a partner should ask the coordinator of the corresponding Centre for these data.

To use data for a cooperative study, a member should write a short text describing the project and send it to partners of interest. Each partner may decide whether to participate or not and therefore, whether to send or not the corresponding data to the project leader.

Every transfer of data should be anonymised and encrypted.

In the event that the data from the SarcomaBCB result in a publication, the Conticanet consortium has established that the following statement should be included in the acknowledgements or material and methods sections of the manuscript: "The data used in this publication was provided by the SarcomaBCB, the Conticanet database (https://auth.sarcomabcb.org)"

Use of tumour material entered in the SarcomaBCB

This material includes paraffin blocks, frozen tissues and derived products (nucleic acids and proteins).

To obtain material from another Centre for a cooperative study, a partner should write a short text describing the project and send it to the partners of interest. Each partner may decide whether to participate or not and, therefore, whether to send or not the corresponding material to the project leader.

A Material Transfer Agreement (MTA) should be established between Centres.

Only fully anonymised or non-anonymised but coded material can be used in cooperative studies.

The basic consent option is that the patient concerned should have the possibility to opt-out.

The regulations of the Country where the tissue was taken from the patients and was stored decide whether the material may be used in another Country with possibly different regulations.

Transfer of material should be organised and taken in charge by the project leader.

In the event that the material used result in a publication, the Conticanet consortium has established that the following statement should be included in the acknowledgements or material and methods sections of the manuscript: "The material used in this publication was provided by the SarcomaBCB, the Conticanet database (https://auth.sarcomabcb.org)"