eustar  —  european scleroderma trials and research



EUSTAR Structure and Rules


During the 2004 Annual EULAR congress in Berlin, the delegates have voted to structure the group as follows: chairman, secretary, treasurer, board of counsellors, general assembly.

Officers are elected by the general council for a term of 3 years, with option for another 3 years renewal. All executive decisions should be unanimous among the 3 officers and approved by the board of councilors. The delegates have elected the following members of the executive office of EUSTAR for 2013-2016:




  • Should the chairman be unable to complete his/her term of office, the executive secretary will succeed to his office;
  • The chairman will chair the meetings and in his/her absence will be represented by the secretary;
  • The chairman presents an annual report during the EULAR congress and reports once a year to the ESCISIT committee;
  • The chairman will be responsible to assure the data entry in the data base and will supervise the exploitation of the data base. The secretary and the treasurer will assist the chairman in the supervision of the data base and will present the annual report to the Counsellors and the general council at the EULAR congress.



  • The secretary will assist the chairman in all his activities and will act on his behalf when requested;
  • The secretary will record the minutes of the proceedings of the meetings.



  • The treasurer supervises all money and other property and assets of EUSTAR;
  • In any questions of doubt or in cases of large expenditures (over 10.000 Euros) the treasurer must consult the board of counsellors;
  • The treasurer is responsible to keep accurate books of accounts of all EUSTAR transactions and these books will be audited at the end of each year. The Audit Function shall consist of two auditors to examine the accounts. A written report of their findings will be submitted to the to EULAR annual congress to the General Assembly;
  • In the event of Treasurer being unable to complete his/her term of office, the board of counsellors will appoint a successor to hold office until the next meeting.



  • They will second, help and advise the officers in the management of EUSTAR.


General Assembly

  • Is formed by centers affiliated to EUSTAR; evry center affiliated becomes EUSTAR member when it sends to the secretariat the first MEDS
  • Every center has the duty to develop the EUSTAR network in his country and raise awareness about scleroderma from the political to the social and scientific part;
  • General assembly will meet every year during the EULAR congress;
  • Every center may present to EUSTAR a request concerning the exploitation of the data base for a research: a project should be submitted to EUSTAR with the specific request and explanation how the data will be used including authorship;
  • In case of disagreement among components of the board of counsellors, the issue will be submitted to the general assembly;
  • During the council the yearly meeting will be decided.
  • Every three years, only EUSTAR members have right to vote for the election of the board and councellors. One representative only from the center member may vote.
  • For any other issue to be voted and  decided by the general assembly, every center member has right to one vote.



(revised after business meeting, Paris 2008)

General Rules

  1. EULAR Scleroderma Tirals and Research group (EUSTAR) must be acknowledged on every presentation/publication that results from accepted proposals.
  2. EUSTAR centers providing samples and clinical data should be co-authors on manuscripts and presentations derived from the study (at least one per center) whenever possible. In case of a too high number of authors for the target journal, an adequate acknowledgement must be provided in the paper. Conflicts of interests in this matter will be decided by the Executive Officers If submitting centers do not agree with this procedure, they must clearly state this in the proposal. There are no exceptions from this rule. The sequence of authors is decided by the submitting center, but should in general be based on the numbers of samples contributed to the study.
  3. The intellectual content of the proposal belongs to the submitting center. Misuse of the proposal for own studies is strictly forbidden.


Rules for Board Election

The caretaker officers positions will be  opened to candidature and there being no alternative nominations, election by closed written ballot will take place by one representative of every EUSTAR members eligible to vote.

The caretaker officers will be elected by an overwhelming majority (>50%), supervised by the appropriate EULAR officer

According to the EUSTAR statute, election is for 3 years with an option to continue for another 3 years. Officers can be re-elected only in a different position.

The following positions are open to election:

  • president
  • secretary
  • treasurer
  • councellors (4)

The past board will present the names for nomination.

Any other colleague or group of colleagues can be nominated for election. This one must be EUSTAR member.

In April, before the elections taking place during the EULAR congress in June,  an announcement will be made asking all EUSTAR members  for nominations. Nominations must arrive at the EUSTAR secretariat before the end of April. Nominations will be collected and the names will be put forward for election.

Committee members will be chosen by the board (after the elections of officers) and proposed to the general assembly for ratification.

The next new board (chairman, treasurer, secretary) will be elected after 2 years and will start to work with the previous board in order to shape up the EUSTAR programme of the next triennium.


RULES for submission of PROJECTS to Committees

  • Eustar will foster the application from Eustar members.
  • Eustar will allow also non members to apply. The work must be then published under Eustar committee overview and approval.
  • Eustar submission form must be used.
  • Application must be forwarded directly to the chairman of the Committee.
  • If the project is not covered by the Ethical Committee approval for the database (MEDS-online), the applicant must obtain local approval and approval for each of the participants.
  • Review will be performed by the committee (at least 2 independent reviewers) within 4 weeks.
  • The result of the review will be forwarded to the chairman and the board. The board will send its final decision to the chairman of the committee and the applicant within 2 weeks after the receipt of the reviewers’ comment
  • Revisions can be suggested to applicants.
  • The advancement of the projects should be provided every 6 months to the chairman of Clinical or Research committees.
  • The chairman of the committee must inform the Eustar chairman of the advancement of the work.
  • The advancement of the project will be presented each year at the business meeting.
  • A project has to move forward and may be closed if nothing is moving including publication.
  • Submission of abstracts must be validated by the Board or by the chairman in case it is later.
  • Publications must fulfill the rules of authorship and must be sent to the board before submission.
  • Manuscripts must be submitted to the ESCCA chairman and EULAR Steering Committee before submission.
  • EULAR meeting and Annals of the Rheumatic Diseases should be first targeted for presentation of the results
For any information, contact always the chairmen of the Committees.


RULES about DNA samples

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 EULAR Scleroderma Trials and Research (EUSTAR) in the title, before being submitted  to a journal, must follow a specific pathway:
According to EULAR rules all EUSTAR manuscripts must be submitted to the ESCCA chairman before sending to any journal. The ESCCA chairman then circulates the manuscript to the EULAR Steering Committee 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.
This is the rule for all the EULAR Standing Committees. 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 or EULAR in the title.
For any information, contact always the chairman or the Secretariat.


RULES for Relationship with COMPANIES

  • It has been decided by all members that companies may have access to data presented on MEDS on line for special purposes. EUSTAR will be the interface between companies and centres that have filled MEDS on line. When a company wants samples collected in EUSTAR centres, they have to ask the permission to EUSTAR and once approved, they will pay the centres that have provided the samples and the data. The 10% of the income will be devoted to central data management, 10% to the project coordinating Centre.
    After cross consultation the following fees were decided:
  • Regular updates on demographics from the MEDS for a fixed annual fee (€ 20,000?)
  • NO details of centres
  • Ad hoc project based studies with fee (per CRF) according to amount of work required. All negotiations between EUSTAR and Company only.
  • 10% to PI centre
  • 10% to EUSTAR plus actual costs involved
    Rest to centres / CRF

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)