european network for adrenal tumors

 

by-laws

Definitions

“ENS@T” means the European Network for the Study of Adrenal Tumors established in 2002 as recalled in section 1.1 of the Charter.

“Members” mean the individual participants to ENS@T according to section 5 hereunder. 

“By-Laws” means the present document which sets out the detailed working arrangements agreed upon by the members of ENS@T.

“Statutes” means the affiliated document that sets out the principles of the organization of ENS@T.

1. Preamble: about the network

1.1 Presentation of the Network

ENS@T is the acronym for European Network for the Study of Adrenal Tumors, a network founded in 2002. It is fully dedicated to supporting research into adrenal tumors by facilitating access to high quality human biological resources (fluids, DNA, cells and/or tissues) and their associated bio clinical data from patients with adrenocortical tumors, pheochromocytomas or paragangliomas. It aims to improve the understanding of the pathophysiology and natural history as well as the diagnostic and therapeutic management of adrenal tumors and adrenal hormone excess. ENS@T endeavours to bring together a critical mass of expertise and resources to achieve significant basic science and clinical research progress to facilitate bench to bedside translation helping to combat adrenal tumors.
1.2 The founding partners of ENS@T

The 4 ENS@T founding partners (as listed hereunder) represent networks from 4 European countries (France, Germany, Italy, United Kingdom) and are composed of leading academic clinical departments and research laboratories in each country.

1.2.1 COMETE (Cortical and Medullar Endocrine Tumors).

This network was founded in 1993. It comprises two clinical departments (service d’Endocrinologie et Maladies Métaboliques, Hôpital Cochin and Université Paris Descartes [Head: X Bertagna]; and unité d’Hypertension artérielle, Hôpital Européen Georges Pompidou and Université Paris Descartes [Head: PF Plouin]); two departments of pathology in Cochin [Head: MC Vacher-Lavenu] and Hôpital Européen Georges Pompidou (Head: P Bruneval]; and 4 INSERM units (U-772, Paris [Head: X Jeunemaitre]; EMI 01-05, Grenoble [Head: JJ Feige], U-413 Rouen [Head: Y Anouar], and U-567, Paris [Head: J Bertherat])

1.2.2 GANIMED (German Adrenal Network Improving Medical research and Education).

This network was founded in 2000 by members of the German Endocrine Society to promote adrenal research and education. The founding members are all scientists from the fields of pediatric endocrinology, laboratory diagnosis, internal medicine and endocrine surgery, who are actively involved in adrenal research. Since the Adrenal Section of the German Endocrine Society was founded in 2003, GANIMED has worked closely together with it, primarily as a network for coordinating the section's research activities. GANIMED has led to the instigation of several multi-centre studies. GANIMED's research activities are established at the section meetings within the framework of yearly German Endocrine Society conventions, as well as at national adrenal research conferences.

1.2.3 NISGAT (National Italian Study Group on Adrenal Tumors).

This network was founded in 1998. It comprises the following centers: Divisione di Endocrinologia, University of Padua (Head: F Mantero); U.O. di Endocrinologia, University of Florence (Head; M Mannelli); Medicina Interna I, University of Turin (Head: A Angeli); Divisione di Endocrinologia, University Federico II Naples, (Head: G Lombardi); U.O. di Endocrinologia Università, University of Milan (Head: B Ambrosi); Istituto di Endocrinologia, Catholic University of Rome (Head: G Pontecorvi); Divisione di Endocrinologia, University of Ancona (Head: M Boscaro). Further groups are presently taking part in multicenter studies on adrenal tumors and are expected to join the network.

1.2.4 UK ACT

This initiative was initially driven by the University of Birmingham (P. Stewart, W. Arlt). However, over recent years it has now evolved to a nationwide network incorporating all major centres for adrenal tumor management within the United Kingdom, the UK AdrenoCortical Tumour Network, UK ACT. In addition to Birmingham, this includes Addenbrooke’s Hospital Cambridge (M.Gurnell, H. Simpson), Manchester (P. Trainer, G. Brabant), Oxford (J. Wass, A. Weaver, G. Sadler), Sheffield (J. Newell-Price, B.J. Harrison), London St. Bartholomews’s (A. Grossman), London King’s & Guy’s (S. Aylwyn), Newcastle (S. Ball, T. Lennard), Glasgow (J. Connell), Edinburgh (M. Strachan), Aberdeen (J. Bevan, Z. Krokowski), Dundee (G. Leese), Cardiff (A. Rees, M. Scanlon, D. Coombes) and Belfast (A.B. Atkinson, S.F. Dolan).
1.3 The achievements of ENS@T between 2002-2008

Common quality criteria were defined; clinical databases to document cases with aldosterone-producing or non-aldosterone-producing adenomas, adrenocortical carcinomas and pheochromocytoma or paraganglioma were prepared; Standard Operating Procedures for adrenocortical tumors were developed; a dedicated website (www.ensat.org) was established; screening strategies to detect familial pheochromocytoma and paraganglioma and a new TNM classification for adrenocortical carcinoma were proposed. ENS@T also played a key role in the initiation and execution of the first international randomized trial for metastatic and advanced adrenal cancer (FIRM-ACT; www.firm-act.org).
1.4 Proposed Structure at Incorporation of ENS@T

Chair: Felix Beuschlein (G)
Secretary: Pierre-Francois Plouin (Fr)
Treasurer: Jerome Bertherat (Fr)
Executive Committee: Felix Beuschlein (G), Pierre-Francois Plouin (Fr), Jerome Bertherat (Fr), Wiebke Arlt (UK), Massimo Mannelli (I), Massimo Terzolo (I)

Initial Full ENS@T members:

Felix Beuschlein (G), Pierre-Francois Plouin (Fr), Jerome Bertherat (Fr), Wiebke Arlt (UK), Massimo Mannelli (I), Massimo Terzolo (I), Paul Stewart (UK), Bruno Allolio (G), Xavier Bertagna (Fr), Franco Mantero (I), Martin Reincke (G), John Connell (UK), Giuseppe Opocher (I), Gian Paolo Rossi (I), Martin Fassnacht (G), Stefanie Hahner (G), Marcus Quinkler (G), Jean Jacques Feige (Fr), Jacques Lenders (NL), Anne-Paul Gimenez (Fr), Eric Baudin (Fr)

1.5 Objectives and future developments

ENS@T is supportive of the long-term promotion of research on adrenal tumors through its dedicated website and the organization of regular meetings.

ENS@T founding partners intend to consolidate the network as a self-sustained structure in the long-term and establish ENS@T as a permanent and integrated European network for research on adrenal tumors. The founding partners are fully dedicated to:

- operate the network as a non-profit trans-national platform;
- open the network to new members across Europe;
- increase the distribution of quality material for research into adrenal tumors; 
- further improve diagnostic and therapeutic standards; 
- ensure the sustainability of the network.


2. Purpose of the Statutes and By-laws

The statutes represent the constituting instrument of ENS@T. It sets out the principles agreed upon by the members of the network. In addition, the Bye-laws to the statutes recalls the ethical guidelines endorsed by the ENS@T and its members, defines the organization and governance of the network, establishes the benefits and duties attached to membership, as well as the conditions of access to and withdrawal of membership. 


3. Ethical guidelines endorsed by ENS@T

ENS@T and its members fully endorse the recommendations issued by the Organisation for Economic Cooperation and Development (OECD) task force on data and biological sample collections, in accordance with the applicable national and European laws and regulations.

The members further undertake to comply with the following good practices:

3.1 Respect of the patient’s autonomy through the informed consent for collection and use of clinical data and biological material for research

3.2 Confidentiality of the data

3.3 Sample collection: respect of non-patrimoniality

3.4 Access to samples: ad-hoc board approval of the projects for which the biological samples are requested, no distribution of samples for cloning projects, respect of the Oviedo Convention on Human Rights and Biomedicine and Additional Protocols, 4th April 1997; and International declaration on human genetic information, UNESCO general conference, 32nd session, Paris October 8th 2003

3.5 Information to the patients on the use of data and collections and the outcomes of the research project(s)


4. Organization and governance of the network

The governance structure of ENS@T shall comprise the following bodies:
  • Constituent General Assembly: this Assembly of the full members listed in 1.4. will take place in Paris on May 15, 2009
  • General Assembly (annual meeting of all full members) that elects the members of the Executive Committee. An Extraordinary General Assembly can propose alterations to the statutes or byelaws, or decide to modify, merge or end the Network. Such Assembly must be convened by the Executive Committee or required by at least one half of full members. At least 50% of full members must be present. Decisions must be taken at a majority of ¾ of voters.
  • An Executive Committee, as the overall management and decision making body of ENS@T
  • The Chair of the Executive Committee and the Secretary, both are members of and nominated and elected by the Executive Committee
  • A Treasurer that may be a member of the Executive Committee
  • An Advisory board (as decided by the Executive Committee)
  • ENS@T Working groups (set up and terminated upon decision of the Executive Committee)

4.1 The Executive Committee

4.1.1 Composition
The Executive Committee is composed of six members, including the Chair and the Secretary, and preferably scientific representatives from each thematic area and different countries as reflected by ENS@T membership.

4.1.2 Role of the Executive Committee
The Executive Committee is the decision-making body of ENS@T and will be responsible for:

  • Election of the Chair, Secretary and Treasurer
  • Decision on strategic orientation of ENS@T
  • Setting up and termination of ENS@T Working Groups according to the strategic orientations, overseeing the activities of the Working Groups
  • Establishing and monitoring performance control procedures.
  • Proposing modifications and amendments of ENS@T organization and statutes for decision at the General Assembly
  • Terms of use of ENS@T name and logo
  • Prepare the network's budget (membership fees, investments, etc.)
  • Decide on membership matters
  • Processing applications regarding access to database information and biomaterial collections
4.1.3 Election of Executive Committee members
Executive committee members are elected by full members of ENS@T. Only full ENS@T members are eligible to be elected. They are appointed for six consecutive years; immediate re-election is not possible. Every two years two committee members will leave and two new members will be elected

Candidates for the Executive Committee can be proposed by every full ENS@T member. Proposals should be made in writing to the Secretary who will verify eligibility of the candidate.
The candidates will be announced by the Secretary to all full ENS@T members by circular email. The voting process will either be performed by E-vote or written vote. There has to be a time period of at least 30 days between announcement and voting deadline.

4.1.4 Ending membership to the Executive Committee
In case of two consecutive non motivated absences to the Executive Committee meetings

4.1.5 Chair
The Chair is elected by the majority of the Executive Committee and appointed for two years (renewable for one further term of office).

The role of the Chair includes:
- convening at least 15 days in advance and chairing the Executive Committee meetings;
- implementing the scientific decisions taken at the Executive Committee meetings;
- carries the deciding vote in case of split votes at Executive Committee meetings

4.1.6 Secretary
The Secretary is elected by the majority of the Executive Committee and appointed for two years (renewable for two further terms of office).

The role of the Secretary includes:
- producing written minutes of the Executive Committee meetings;
- implementing the administrative decisions taken at the Executive Committee meetings;
- processing applications of new members applying to join ENS@T
- Preparing and giving an annual report (including financial summary) to the General Assembly
- Overseeing fiscal responsibility of ENS@T

4.1.7 Meetings
The Executive Committee will communicate directly at least twice a year, either by telephone conference or face-to-face meetings. An Executive Committee member may be represented by another Executive Committee member. Present members can have only one mandate. Valid decisions of the Executive Committee meetings require at least 4 present members.

4.2 The Advisory Board

The Advisory Board may comprise previous members of the Executive Committee, representatives with specific expertise in clinical trial methodology, ethical issues, biobanking, and computational statistics as well as representatives of patient groups and industrial partners. 

The Executive Committee votes on the membership of the Advisory board. Elected advisory board members will be invited as needed to attend the entire or parts of the Executive Committee meetings as non-voting attendees. 
Advisory board members do not need to be ENS@T members.

4.3 ENS@T Working groups

ENS@T Working groups are initiated and closed upon decision of the Executive Committee. If the Head of the Working Group is not an Executive Committee member, the Head will be invited to attend Executive Committee meetings as a non-voting member.

The Head of the Working Group will provide an annual report back to the Executive Committee.

The head and members of an ENS@T working group have to be full ENS@T members. Full ENS@T members can participate in working groups according to their scientific interest. The head of an ENS@T working group is appointed by working group members for the duration of 3 years, which may be extended for one further term. For election of the working group head at least half (50%) of working group members must vote. Each working group member has one vote and single majority is sufficient for election of a candidate.


5. Membership to ENS@T

There are three ENS@T membership categories.

5.1 Full members

5.1.1 Benefits attached to membership:

Benefits of full membership to the ENS@T include:
  • Having the right to submit an application to the Executive Committee requesting access to database information or biomaterial collections
  • Having the right to vote on the composition of the Executive Committee membership
  • Being involved in a highly visible and reputed European network dedicated to adrenal tumors
  • Being listed on the ENS@T website; accessing the ENS@T intranet
  • Using the ENS@T name and logo, in accordance with the rules established by the Executive Committee
  • Having a privileged access to know-how and services provided by other members
5.1.2 Duties attached to membership:

Full Members are expected to:

  • To comply with the principles defined in the statutes
  • To actively contribute to ENS@T with regular attendance at meetings
  • To comply with all applicable national and European laws and regulations in the field of biological samples management and distribution, for research purposes
  • To pay an annual membership fee as determined by the Executive Committee
  • To inform ENS@T of publications resulting from the use of the biological samples provided through ENS@T, and to ensure the appropriate acknowledgment of ENS@T contributions to the paper
Activities of full Members of ENS@T may include the following:

  • To promote the network and aim to obtain external financial support
  • To provide underpinning infrastructure, e.g. bioinformatics
  • To contribute and provide feedback on different topics of common interest presented by the Executive Committee, Heads of Working Groups or other members
  • To provide biological material according to ENS@T Standard Operating Procedures (SOPs) and/or clinical information according to ENS@T database format
  • To follow the recommendations of ENS@T on Material Transfer Agreement (MTA) and Informed Consent form
  • To ensure the accuracy of any information on the materials it supplies to ENS@T and to promptly correct any error therein of which it is notified
  • To regularly update the information on biological material samples (as determined by the Executive Committee)
5.2 Associate members

5.2.1 Benefits attached to associate membership:

Benefits of associate membership to ENS@T include:
  • Being involved in a highly visible and reputed European network dedicated to adrenal tumors;
  • Reduced participation fee at the annual scientific conferences, eligibility for ENS@T travel grants and awards
  • Being listed on the ENS@T website; access to the ENS@T intranet;
  • Having a privileged access to know-how and services provided by other members;
5.2.2 Duties attached to membership:

Associate Members are expected to:
  • To comply with the principles defined in the statutes
  • To actively contribute to ENS@T with regular attendance at meetings
  • To pay an annual membership fee as determined by the Executive Committee
Activities of Associate Members of ENS@T may include the following:
  • To promote the network 
  • To contribute and provide feedback on different topics of common interest presented by the Executive Committee, Heads of Working Groups or other members
  • Associate members do not have the right to vote on the composition of the Executive Committee membership. 
5.3 Auxiliary members

5.3.1 Duties attached to membership:

Auxiliary Members of ENS@T are required to:
  • To comply with the principles defined in the statutes
  • To comply with all applicable national and European laws and regulations in the field of biological samples management and diestribution, for research purposes
Activities of Auxiliary Members of ENS@T may include the following:
  • To handle biological material according to ENS@T Standard Operating Procedures (SOPs)
  • To enter clinical information according to ENS@T database format
Auxiliary members do not have the right to vote on the composition of the Executive Committee membership. 

5.4 Supporting members

5.4.1 Benefits attached to membership:

Benefits of supporting membership of ENS@T include:
  • Being involved in a highly visible and reputed European network dedicated to adrenal tumors;
  • Being listed on the ENS@T website
Supporting members of ENS@T undertake:
  • To comply with the principles defined in the charter
  • To pay an annual membership fee as determined by the Executive Committee
Supporting members do not have the right to vote on the composition of the Executive Committee membership. 

5.5 Applying for membership

Candidates should apply for membership to the Secretary. Applications for membership to ENS@T shall be submitted in writing, by returning the Membership Application Form.

The Executive Committee may reject any application to membership, under its sole discretion, without having to duly justify the rejection. Any decision of the Executive Committee shall be final. The Secretary shall notify the applicant in writing of the outcome of the application. If the application has been accepted the new member’s name will be added to the official list of ENS@T members upon full payment of the requested annual membership fee.

5.6 Ending membership

Any ENS@T member can voluntarily withdraw from membership through a written declaration sent to the Secretary. 

Any ENS@T member can be excluded from the network, with immediate effect and without judicial intervention:
  • Through a decision of the Executive Committee if any action damaging the interests of ENS@T has been committed by the member. The Secretary will notify the excluded member within 7 days of the Executive Committee decision;
  • Through a decision of the Executive Committee, if a member is in arrears with the payment of his annual fees and has not, in spite of two written warnings, corrected this
  • Through a decision of the Executive Committee, if a member seriously violates the one or several major principles of the statutes and has not, in spite of two written warnings, made any action to reverse the violation.

6. Registered Office

Unité Pilote de Coordination INCa, Cancers de la Surrénale, Service des Maladies Endocriniennes et Métaboliques, Groupe Hospitalier Cochin-Saint-Vincent-de-Paul, 27, rue du Fbg St. Jacques, 75014 Paris


7. Social exercise

From January 1st to December 31st.


8. Liability

The present statutes and Bye-laws cannot be interpreted as creating any liability between the members of ENS@T. In particular,

With respect to information or materials supplied by one member to another through the ENS@T, the supplying member shall be under no obligation or liability other than as stated in this Bye-laws, and no warranty condition or representation of any kind is made, given or to be implied as to the sufficiency, accuracy or fitness for purpose of such information or materials. The recipient member shall therefore in any event, be entirely responsible for any use whatsoever of such information and materials.
No member shall be responsible to another member for indirect or consequential loss or damages such as, but not limited to, loss of profit, loss of revenue or loss of contracts.


9. Declaration

Nothing contained in this the statutes and Bye-laws shall constitute or be deemed to constitute either a partnership or any formal business organization or legal entity between the members. Each member shall act as an independent entity and not as the agent of any of the other member. Nothing contained in these Bye-laws shall be construed as constituting or organizing the sharing of profits or losses arising out of the efforts of any other member hereunder.
  © ENS@T - European Network for the Study of Adrenal Tumors 2002 - 2012
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