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EUropean Scleroderma Trials And Research group

EUSTAR actively encourages and supports the development and conducting of clinical and basic science research in systemic sclerosis

Who we are

The European Scleroderma Trials and Research group (EUSTAR) aims to foster the awareness, understanding and research on systemic sclerosis and its management throughout Europe and the rest of the world.

EUSTAR is an international scleroderma research network acting under the umbrella of the World Scleroderma Foundation. The aim is to coordinate and focus research activities, in order to improve treatment, quality of life and prognosis of patients with scleroderma. The EUSTAR group was launched in 2004 and was initially supported by the European League Against Rheumatism (EULAR). The main research tool is a multicenter online database that allows following prospectively more than 15,000 patients with scleroderma in more than 200 International centres. Each patient’s annually scheduled visit for medical purposes is recorded providing longitudinal observational data. Any contributing team can submit a research project and get access to the whole database for the specific approved project.

Projects

DATABASE

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CENTERS

Affiliation to EUSTAR is open to all centers devoted to the care and study of SSc. Requirement for center affiliation is the capacity to care for SSc patients according to the EUSTAR regulations.

PROJECTS

EUSTAR actively encourages and supports the development and conducting of clinical and basic science research. At-a-glance information on all current trials and projects hosted by EUSTAR.

EDUCATION

The EUSTAR educational course on systemic sclerosis in place and online course. The EULAR On-line consists of 10 modules which deal with physiopathology, clinical aspects and management of this complex disease.

Rules

  • EUropean Scleroderma Tirals and Research group (EUSTAR) must be acknowledged on every presentation/publication that results from accepted proposals.
  • 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 cases/samples contributed to the study.
  • The intellectual content of the proposal belongs to the submitting center. Misuse of the proposal for own studies is strictly forbidden.

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 World Scleroderma Foundation 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 and will start to work with the help of previous board in order to shape up the EUSTAR programme of the next triennium.

SOP EUSTAR clinical project

  1. Apply for a EUST AR project on the EUST AR website: http://eustar.org/projects
  2. The application review is handled by the EUST AR clinica! project coordinator
  3. The project is assigned a clinica! project number and the clinica! project leader adds it to the project number list.
  4. The project is send out for external review (1-2 reviewers)
  5. The clinica! project coordinator is confirming the receipt by email.
  6. The board and clinical project leader agree to the application after review. In a split vate, the EUSTAR chairman decides.
  7. The applicant signs the author form, which indicates that the database will only be used for the spe-cific project. The form also included informati on on the authorship rules for EUSTAR projects ( own SOP).
  8. The applicant sends the signed form back to the clinica! project leader.
  9. The EUST AR statistician/database manager will be contacted to send the applicant a recent down-load of the database. If any restrictions apply to the datato be provided (full data set or just paits), the data manager gets informed. Specific information: The data will be drawn once a month – usually in the first week of a month – an expoti of the database (Excel file).
  10. The data manager/statistician will provide the recent EUSTAR Excel file via a Drop box link per email to the applicant with the clinical project leader and the EUST AR secretary in cc.
  11. Authorship: Please referto the EUSTAR publication SOP. When the EUSTAR database is used, EUSTAR authors need to be included. Please contact the EUST AR board early enough to select co-authors and include them in the result discussion.
  12. When a project results in a publication, the applicant is sending the paper to provide the clinica! pro-ject leader with the publication information and a pdf.
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.

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)
  • NO details of centres
  • 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)

EUSTAR Structure

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 World Scleroderma Foundation 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 Vice-President will assist the chairman in all his activities and will act on his behalf when requested; the Vice-President 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.

Is formed by centers affiliated to EUSTAR; every center affiliated becomes EUSTAR member when it has recorded partient cases in the database

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.

For any other issue to be voted and decided by the general assembly, every center member has right to one vote.

During the 2016 Annual EULAR congress in London, 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 2016-2019:
• Chairman: Yannick Allanore
• Secretary: Otylia Kowal-Bielecka
• Treasurer: Oliver Distler
• Councellors: Duska Martinoivc, Alexandra Balbir Gurman, Armando Gabrielli, Nikolas Hunzelmann

Boardmembers

The election of the new Eustar board took place at the last business meeting during the 2022 EULAR congress in Copenhagen. In agreement with WSF and according to the principles of gender equality, the board will be referred to as execute office and the extended board as “EUSTAR board”. The positions of the chairman will be referred to as President and the position of the executive secretary will be referred to as Vice-President.

Prof. Francesco Del Galdo

President

Prof. Marie Elise Truchetet

Vice-President

Prof. Madelon Vonk

Treasurer

Dr. Corrado Campochiaro

Councellor

Dr. Michael Hughes
 

Councellor

Dr. Maria Grazia Lazzaroni

Councellor

Dr. Tânia Santiago
 

Councellor

Young Investigators

The EUSTAR Young Investigators Group is a subgroup of EUSTAR members, first founded in 2007 and lead by young emerging experts in the field of Scleroderma, Dr. Ingo Turner and Dr. Christian Beyer. Now, ten years after its foundation, the EUSTAR Board has chosen Dr. Vincent Sobanski from the University of Lille and Dr. Cosimo Bruni from the University of Florence to be the new co-chairs, aiming at re-building the group and giving it a scientific and prospective role in the field of scleroderma research and communication.

The new EUSTAR Young Investigators Group has so far enrolled new members (all under forty) from EUSTAR centres since Dr. Sobanski and Dr. Bruni took over on May 2017. During their first official meeting at the EULAR Congress 2017 in Madrid, the aims of the Young Investigators Group were outlined and different subgroups were created in order to cover all spectrums of interest in the scleroderma field. First of all, education will be a strategic focus point for this group, aiming at identifying outstanding clinical, epidemiological and basic science news in the field of scleroderma during international congresses and disseminating to the whole scleroderma community, through the use of the Internet and social media. Another important objective of the group, will be to increase the visibility of EUSTAR and help gather more people devoted to scleroderma patients. Moreover, the Young Investigators Group will also have members focussing on previously unexplored areas to create possible future research projects in both basic, transitional and clinical science, and is dedicated to promoting young emerging researchers’ ideas. The Group will be instrumental in helping different EUSTAR centres communicate and share data through the MEDS-online registry, which represents the largest international database of scleroderma patients to date.

Given this new structure and aims of the Group, the EUSTAR Young Investigators Group is working to endorse education, communication and scientific output of the future systemic sclerosis experts.

The EUSTAR Young Investigators Group is welcoming new members continuously! Feel free to contact Dr Cosimo Bruni (cosimobruni85@gmail.com) for further info.

Current chair:

  • Cosimo Bruni, Florence, Italy.

Current Group coordinators:

  • Julia Spierings, Utrecht, The Netherlands
  • Alain Lescoat, Rennes, France
  • Maria Grazia Lazzaroni, Brescia. Italy
  • Abdulla Watad, Tel-Hashomer, Israel
  • Alessandro Giollo, Verona, Italy
  • Alexandra Burlui, Iasi, Romania
  • Alfredo Guillen del Castillo, Barcelona, Spain
  • Ana Maria Gheorghiu, Bucharest, Romania
  • Audrey Benyamine, Marseille, France
  • Aurèlian Chepy, Lille, France
  • Ayse Kocak Sezgin, Kutahya, Turkey
  • Barbara Russo, Geneva, Switzerland
  • Benjamin Chaigne, Paris, France
  • Blaz Burja, Lublijana, Slovenia
  • Catarina Duarte, Almeda, Portugal
  • Catarina Tenazinha, Lisbon, Portugal
  • Claudia Cobilinski, Bucharest, Romania
  • Corrado Campochiaro, Milan, Italy
  • Devis Benfaremo, Ancona, Italy
  • Elhai Muriel, Zurich, Switzerland
  • Elisabetta Zanatta, Padova, Italy
  • Enrico De Lorenzis, Rome, Italy
  • Emanuela Praino, Bari, Italy
  • Emmanuel Ledoult, Lille, France
  • Eugenia Bertoldo, Verona, Italy
  • Giacomo de Luca, Milan. Italy
  • Greta Pellegrino, Roma, Italy
  • Håvard Fretheim, Oslo, Norway
  • Hilde Jenssen Bjorkekjaer, Oslo, Norway
  • Imon Barua, Oslo, Norway
  • Inês Cordeiro, Lisbon, Portugal
  • Iulia Szabo, Cluj, Romania
  • Jelena Colic, Belgrade, Serbia
  • Jennifer Ben Shimol, Holon, Israel
  • Jens Vikse, Oslo, Norway
  • Joana Caetano, Almada, Portugal
  • Kristina Clark, London, UK
  • Maithri Prasad Aspari, Aarhus, Denmark
  • Marco Di Battista, Pisa, Italy
  • Marin Petric. Slpit, Croatia
  • Michael Hughes, Manchester, UK
  • Michele Iudici, Geneva, Switzerland
  • Mickael Essouma, Yaoundé, Cameroun
  • Patricia Martins, Lisbon, Portugal
  • Rucsandra Dobrota, Zurich, Switzerland
  • Tania Louza Santiago, Coimbra, Portugal
  • Vasco Romão, Lisbon, Portugal
  • Veronika Jaeger, Muenster, Germany
  • Yossra Atef Suliman, Assiut, Egypt
  • Jeska de Vries-Bouwstra, Leiden-Nijmegen, Netherlands
  • John Pauling, Bath, UK
  • Marie-Elise Truchetet, Bordeaux, France
  • Alberto Floris, Cagliari, Italy
  • Anna-Maria Hoffmann-Vold, Oslo, Norway
  • Carina Mihai, Bucharest, Romania
  • Cristian Caimmi, Verona, Italy
  • Cristina Ponte, Lisbon, Portugal
  • Doreen Belz, Köln, Germany
  • Edoardo Rosato, Roma, Italy
  • Elisa Visali, Catania, Italy
  • Gemma Lepri, Firenze, Italy
  • Giovanna Cuomo, Naples, Italy
  • Matteo Piga, Cagliari, Italy
  • Mattia Congia, Cagliari, Italy
  • Pia Moinzadeh, Köln, Germany
  • Tunde Minier, Pecs, Ungary
  • Walter Alberto Sifuentes Giraldo, Madrid, Spain

© 2022 European Scleroderma Trials and Research Group (EUSTAR)