european network for adrenal tumors

 

by-laws


DOCUMENT HISTORY

Version

Date

Description

Author(s)

1

04/28/08

1st draft

PF Plouin

2

05/15/08

2nd draft

PF Plouin, X Bertagna

3

06/06/08

3rd draft

PF Plouin, J Bertherat, M. Mannelli, M. Terzolo, W. Arlt, F. Beuschlein

4

07/01/08

4th draft

F. Beuschlein

5

09/23/08

5th draft with minor editorial changes and inclusion of application forms

F. Beuschlein, W Arlt, PF Plouin

6

10/27/08

6th draft with major changes following discussions at Firenze meeting

WA, PMS, XB, MM, FM, BA, PFP, MT, FB, MR

7

10/30/08

6th draft with minor changes (implementation of initial Executive Committee and full members, implementation of Application Form for Supporting Members)

F. Beuschlein

8

11/07/08

Final version approved by all SC and EC members

 

9

03/23/2009

Version including alterations to comply with French regulations

 

10

10/27/2010

Version including amendment decided on during the 1. General assembly (27.10.2010) in Turin

F. Beuschlein

11

12/25/2011

Version including changes decided on during an e-vote (ended 23.12.2011)

F. Beuschlein

12

11/14/2014

Version including amendments decided during general assembly (22.11.2014)

F. Beuschlein

13

June 2017

Draft version with updates

M. Fassnacht and F. Beuschlein

14

11/16/2017

Version including modifications decided on during the 8. General Assembly (16.11.2017) in Paris

General Assembly


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 participants to ENS@T according to section 5 hereunder.

 “Bye-Laws” means the present document which sets out the detailed working arrangements agreed 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 associated bioclinical 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 endeavors 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 MEdullary Endocrine Tumors).

This network was founded in 1993. It comprised at the origin 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 initiated by B. Allolio and M. Reincke and 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-center 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 comprised at its beginning 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 driven by the University of Birmingham (P. Stewart, W. Arlt). However, over recent years it has evolved into a nationwide network incorporating all major centers for adrenal tumor management within the United Kingdom, the UK AdrenoCortical Tumour Network, UK ACT. In addition to Birmingham, this included at the time of the initiation 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. Bartholomew’s (A. Grossman), London King’s College & Guy’s Hospital (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

An informal Executive Committee (Xavier Bertagna (FRA; chair), Bruno Allolio (GER), Massimo Mannelli (ITA), Franco Mantero (ITA), Pierre-Francois Plouin (FRA), Martin Reincke (GER), and Paul Stewart (UK) founded ENS@T and were responsible for the very successful development of the first years. Common quality criteria were defined; clinical databases to document cases with aldosterone-producing or non-aldosterone-producing adrenocortical adenomas, adrenocortical carcinomas and pheochromocytoma or paraganglioma were prepared and four working groups were established (aldosterone-producing adenoma, headed by Franco Mantero; non-aldosterone-producing adenomas, headed by Paul Stewart, adrenocortical carcinoma headed by Bruno Allolio, and pheochromocytoma, headed by Pierre-Francois Plouin). In addition, 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 (GER).

Secretary: Pierre-Francois Plouin (FRA).

Treasurer: Jerome Bertherat (FRA).

Executive Committee: Felix Beuschlein (GER), Pierre-Francois Plouin (FRA), Jerome Bertherat (FRA), Wiebke Arlt (UK), Massimo Mannelli (ITA), Massimo Terzolo (ITA).

 

Initial Full ENS@T members:

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

 

1.5       Objectives and future developments

 

ENS@T supports 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 Bye-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 recall the ethical guidelines endorsed by the ENS@T and its members, define the organization and governance of the network, establish 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 Organization 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 patient autonomy through informed consent for collection and use of clinical data and biological material for research.

 

3.2       Confidentiality of data.

 

3.3       Sample collection: respect of non-patrimoniality.

 

3.4       Access to samples: ad-hoc board approval of projects requesting biological samples, 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 patients on the use and collection of data and the outcomes of research project(s).

 

4.     Organization and governance of the network

 

The governance structure of ENS@T shall comprise the following bodies:

4.1       General Assembly

 

-              A Constituent General Assembly with all full members listed in 1.4. took place in Paris on May 15, 2009

-              The General Assembly comprises an annual meeting of all ENS@T members.

-              It is the overall governing body of ENS@T. It oversees the Executive Committee and approves the annual budget.

-              It is able to set up and terminate upon proposal by the Executive Committee ENS@T Working Groups to allow coverage of all aspects of research in the field and within the ENS@T network.

-              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.

-              Elections are usually performed by e-voting of all full and honorary members (with exception of the Chair of the Local Organizing Committee of the Scientific ENS@T Meeting, who will be elected during the General Assembly).

 

4.2       The Executive Committee

-              The Executive Committee is the overall management and decision making body of ENS@T between the two annual Assemblies.

 

4.2.1      Composition

The Executive Committee is composed of the following members:

-         The heads of the working groups (elected for three years by the full members of the given Working Group, one immediate re-election is possible).

-       The Chair of the Local Organizing Committee of the Scientific ENS@T Meeting (elected during the General Assembly usually three years ahead of the meeting). However, this ExCo position (including voting rights) is only held 12 months prior to the respective Meeting.

-       Four additional members (elected for three years by all full ENS@T members, one immediate re-election is possible).

 

The Executive Committee should be gender balanced and should include scientific representatives from each thematic area and different countries as well as basic, translational, and clinical scientists as reflected by ENS@T membership.

 

Only full ENS@T members are eligible for election. 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. There has to be a time period of at least 15 days between announcement and voting deadline.

 

4.2.2      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.

-       To prepare modifications and amendments of ENS@T organization and statutes for decision at the General Assembly. Proposals for such changes, however, can be made by all full members.

-       Proposing candidates for the election of honorary membership.

-       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.

 

 

4.2.3      Ending membership to the Executive Committee

In case of two consecutive non motivated absences to the Executive Committee meetings.

 

4.2.4      Chair

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

The role of the Chair includes:

-       Representing the Network internally and externally.

-       Convening at least 15 days in advance and chairing the General Assembly.

-       Preparing and giving an annual report to the General Assembly.

-       Convening at least 15 days in advance and chairing the Executive Committee meetings.

-       Implementing the scientific decisions taken at the Executive Committee meetings.

-       Carrying the deciding vote in case of split votes at Executive Committee meetings.

 

4.2.5      Secretary

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

The role of the Secretary includes:

-       Producing written minutes of the Executive Committee meetings and the General Assembly.

-       Implementing the administrative decisions taken at the Executive Committee meetings.

-       Processing applications of new members applying to join ENS@T.

-       Overseeing fiscal responsibility of ENS@T.

 

4.2.6      Treasurer

The Treasurer is elected by the majority of the Executive Committee and appointed for three years (re-election is possible). The Treasurer may be member of the Executive Committee, but this is not mandatory. If the treasurer is not member of the Executive Committee, he/she will attend the Executive Committee Meetings without voting right.

The role of the Treasurer includes:

-       Managing the budget of the Network, under the approval and the responsibility of the Executive Committee.

-       Preparing and giving an annual financial summary to the General Assembly

-       Advising the Executive Committee in fiscal and regulatory matters.

 

4.2.7      Executive Committee 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.

 

 

4.3       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.

 

 

4.4       ENS@T Working groups

 

ENS@T Working Groups are initiated and closed upon proposal of the Executive Committee, and decision of the General Assembly. They represent the research cores of ENS@T that are defined by specific scientific themes. Every ENS@T member can choose to participate in the activities of different Working Groups according to their scientific interest. The main aim of the Working Group is to organize and to facilitate scientific collaboration in a given thematic topic within the network. The Working Groups are run by an elected Head and a Scientific Board.

 

4.3.1.   Head of the Working Groups

The Head is elected by the majority of the full members of the Working Group and appointed for three years (renewable for one further term of office). Only full ENS@T members are eligible to be elected as Head.

The role of the Head includes:

-       Representing the Working Group in the Executive Committee.

-       Coordinating (together with the Scientific Board) the projects of the Working Group.

-       Supporting the Organizing Committee of the Scientific ENS@T Meetings.

-       Providing an annual report to the Executive Committee on the activities of the Working Group.

 

4.3.2.   Scientific Board of the Working Groups.

Each Scientific Board consists of usually 5 members that are elected by the full members of the Working Group and appointed for three years (renewable is possible). Only full ENS@T members are eligible to be elected as member of the Scientific Boards.

The role of the Scientific Board includes:

-       Supporting the Head of the Working Group in the coordination of the projects of the Working Group

-       Approval of proposed scientific projects as official ENS@T projects.

 

 

 

 

5.     Membership to ENS@T

 

There are five ENS@T membership categories.

 

5.1       Full members

Full members of ENS@T are clinicians and scientists with a long-lasting special expertise in adrenal tumors.

Each approved ENS@T center has to be represented by at least one full member. 

 

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, the Heads and the Scientific Board of the Working Groups.

-       Being eligible for the Executive Committee, Head or Member of the Scientific Boards of the Working Groups.

-       Being involved in a highly visible and reputed European network dedicated to adrenal tumors.

-       Accessing the ENS@T intranet and the ENS@T registry (with privileges as defined by registry policies).

-       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.

-       To supervise the associate and auxiliary member of his/her group.

 

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.

o   To follow the recommendations of ENS@T on Material Transfer Agreement (MTA) and Informed Consent form.

o   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

Associate members of ENS@T are clinicians and scientists with interest in adrenal tumors or in a technique important for the Network (e.g. IT knowledge) that do not qualify for full membership (e.g. in training). Associate members are usually (but not mandatory) members of a research group of a full member.

 

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

-       Access to the ENS@T intranet and the ENS@T registry (with privileges as defined by registry policies);

-       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.

 

 

5.3       Auxiliary members

Auxiliary members of ENS@T are research associates, nurses, technicians, lab members of an approved ENS@T center that support adrenal research. To become auxiliary member the membership application has to be supported by a full member of the affiliated center.

 

5.3.1      Benefits attached to auxiliary membership:

 

Benefits of auxiliary membership to ENS@T include:

-       Reduced participation fee at the annual scientific conferences.

-       Access to the ENS@T intranet and the ENS@T registry (with privileges as defined by registry policies).

 

5.3.2      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 distribution, 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 to pay an annual fee, but have not the right to vote on the composition of the Executive Committee membership.

 

5.4       Honorary members

 

-       Honorary members of ENS@T are clinicians or scientists with particular merits for the Network.

-       They are proposed by the Executive Committee and elected by the General Assembly with majority vote and appointed for lifetime.

-       They have all rights of full members, but annual membership fee are waived.

 

 

 

5.5       Supporting members

Supporting members of ENS@T are private persons, private or public entities that want to support the Network.

 

5.5.1      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.

 

 

5.6       Applying for membership

 

Candidates should apply for membership via the ENS@T homepage (www.ensat.org).

 

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.

 

 

5.7       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.     Scientific ENS@T meeting

 

-       One important tool of ENS@T to foster collaboration and scientific exchange are international scientific meetings.

-       Usually they will be held every year to collate and disseminate information of the latest scientific and clinical studies on the etiology, diagnosis and management of adrenal tumors.

-       The venue of each subsequent meeting will be decided usually three years in advance during the General Assembly after a call for nominations by the Executive Committee. Those nominated will be entitled to present their plans at the symposium. Only full or honorary members will be entitled to be nominated.

-       The chair of the Local Organizing Committee of the Scientific ENS@T Meeting will become member of the Executive Committee in the 12 months prior the respective Meeting.

 

 

7.     Registered Office

 

Service des Maladies Endocriniennes et Métaboliques, Groupe Hospitalier Cochin-Saint-Vincent-de-Paul, 27, rue du Fbg St. Jacques, 75014 Paris

 

8.     Social exercice

 

From January 1st to December 31st.

 

9.     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.

 

10. 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.

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