DNA is property of the patient and of the Eustar centre that has delivered it. If other experiments than that included in the Eustar project in its approved version are considered a simple but formal request should be mailed to the committee in charge of the project (basic or clinical) to obtain permission and thereafter to the co-investigators taking care in particular of ethical issues.
All EUSTAR manuscripts, approved by the EUSTAR Board and bearing the name of EUropean Scleroderma Trials and Research (EUSTAR) in the title, before being submitted to a journal, must follow a specific pathway:
According to EUSTAR rules all EUSTAR manuscripts must be submitted to committee chairman before sending to any journal for comment which takes two weeks.
The preferred journal is Ann Rheum Dis, but this is optional. If “recommendations”, “points to consider” or “criteria” are in the title, then Ann Rheum Dis must be the first choice.
Please, follow these rules in order to avoid any problem in the future. Informal projects arranged between various EUSTAR centres which have not been approved by the EUSTAR board are not allowed to use the words EUSTAR in the title.
For any information, contact always the chairman or the Secretariat.
It has been decided by all members that companies may have access to data presented on the database for special purposes. EUSTAR will be the interface between companies and centres that have filled the database. When a company wants data collected in EUSTAR centres, they have to ask EUSTAR and once approved, they will pay EUSTAR that will use the money to maintain the datased system and improve the quality and content of the database. After cross consultation the following fees were decided:
Regular updates on demographics from the MEDS for a fixed annual fee (€ 20,000)
Ad hoc project based studies with fee according to amount of work required. All negotiations between EUSTAR board and Company only.
The Companies will have no access to raw data, no influence over statistical analysis and no veto rights on the final publications. Only centres in which patients have given permission for anonymous data use will participate (this is an intrinsic part of the MEDS on-line participation)