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Statutes of the Leukodystrophy Network

resolved and put into effect in Bonn on April 7, 2003

 

§ 1 Purpose, Activities, and Location

 

1. The Leukodystrophy Network (Leukonet) is a research team composed of representatives of various disciplines who aim to perform basic and clinical research projects to conduct research into leukodystrophies.

It is the goal of Leukonet to enhance the understanding of the pathogenesis of leukodystrophies, to optimize the diagnosis, and to develop therapies in an effort to improve the treatment of leukodystrophies.

In addition to pursuing the research projects as defined, Leukonet shall also aim to extend and use services outside the Network, to conclude, if necessary, agreements governing the best possible use of tissue samples and other biological samples from patients with leukodystrophies and from their family members, and to initiate and perform cooperative studies on leukodystrophies using standardized test methods.

 

2. Leukonet pursues exclusively non-profit purposes and operates on a selfless basis without purpose of financial gain.

 

3. The principles of cooperation of all bodies and Members of Leukonet and their rights and obligations are governed by the statutes of the research team. In the case of funding (awarding of grants) by the Federal Ministry of Education and Research (herein referred to as BMBF), they are further governed by the “Allgemeine Nebenbestimmungen für Zuwendungen zur Projektförderung auf Ausgabenbasis (General Auxiliary Conditions for Grants on an Expenditure Basis - ANBest-P)” and by the “Besondere Nebenbestimmungen für Zuwendungen zur Projektförderung auf Ausgabenbasis (Special Auxiliary Terms and Conditions for Funds Provided by the BMBF for the Promotion of Projects on Expenditure Basis - BNBest-BMBF 98)”.

When funds are awarded by the BMBF (Grant 01GM0309), all other auxiliary terms and conditions and references in the notification of appropriation of funds dated Aug. 26, 2003 shall be observed as well. The funds allocated to Leukonet shall only be used for purposes stipulated in the statutes and shall be in accordance with the expenditure regulations set out in the notification of appropriation of funds from the BMBF or from its project manager (herein referred to as PT).

 

4. The location of the headquarters of the Network is the place of work of the Speaker of the Network.

 

 

§ 2 Membership

 

1. All project coordinators and participants in the Leukonet application process (application to the BMBF filed in April 2002, Project Coordinators, pages II-IV of the application) are Members of the Network. Moreover, Leukonet encourages all individuals with interest and experience in the area of leukodystrophies to become members and to contribute to the goals of Leukonet. Membership does not necessarily constitute a right to receive funds from the Network.

 

2. The informal application for membership has to be sent to the Speaker of the Network.

 

3. The membership terminates

 

3.1. upon death;

 

3.2. upon cancellation of membership, which shall be in writing and become immediately effective;

 

3.3. by expulsion. A member shall be expelled only for good cause, such as, for example, loss of license to practice medicine, non-fulfillment of the obligations specified by the BMBF (e.g., obligation to give reports), or serious violation of the statutes and goals of Leukonet.

 

 

§ 3 Bodies

 

The bodies of Leukonet are the:

 

1. Managing Committee

 

2. General Meeting

 

 

§ 4 Managing Committee

 

1. The Managing Committee consists of:

 

1.1. the Speaker of the Network (Chairman)

 

1.2. the Deputy Speaker of the Network (Vice Chairman)

 

1.3. a Representative of the Clinical Projects (subprojects 1-5)

 

1.4. a Representative of the Basic Research Projects (subprojects 6-11)

 

1.5. a Representative of the Self-Help Groups

 

The Chairman (Speaker of the Network) shall be responsible toward the BMBF or its PT for giving progress reports and administering the funds allocated to Leukonet. To allow the Speaker of the Network to meet the coordination requirements, all Members of the Network shall readily and immediately make available to him all relevant information.

 

 

§ 5 General Meeting

 

1. The General Meeting shall be convened by the Speaker of the Network. It is to be held once a year. The Speaker shall convene the General Meeting at least four weeks in advance and shall give notice of the agenda.

All Members are entitled to participate in the Meeting. Since the number of coordinators responsible for the individual subprojects differs, each project has only one vote. The self-help groups, taken together, shall also have one vote. The General Meeting shall take place at least once a year. In the case of extraordinary circumstances, additional meetings can be convened. This latter provision requires that at least 33% of the Members vote in favor of it.

 

2. Any motions by Members relating to the agenda of the General Meeting shall be submitted to the headquarters of the Network at least three weeks prior to said Meeting. The Speaker of the Network shall notify the Members in a timely manner of the date by which motions must be submitted. Members shall nevertheless have the right to file motions for changes to the agenda right before the General Meeting.

 

3. The Members present in person at any duly convened General Meeting shall constitute a quorum, irrespective of the number of Members present.

 

4. Voting shall usually be by show of hands. Resolutions require a simple majority vote, unless otherwise specified.

 

5. At any General Meeting, the progress reports of the individual subprojects and the results achieved shall be mandatory items of the agenda.

 

 

§ 6 Tasks of the General Meeting

 

The tasks of the General Meeting include:

 

1. Election of the Managing Committee. Any Member of Leukonet can be elected. Voting takes place by show of hand. Any motion for voting by secret ballot is to be granted. On the first ballot, the majority of the votes of the Members present shall be required for election; on the second ballot, a simple majority shall be required.

The Managing Committee shall be elected for the duration of the funding period; reelection shall be permitted.

 

2. Completion of final agenda

 

3. Passing of resolutions on changes in statutes and on the dissolution of Leukonet

 

4. Establishment of committees

 

5. Admission or expulsion of members after prior notice and due consideration of any possible objections

 

6. The General Meeting shall assess the work results of the subprojects based on a) annual reports presented at scientific meetings and on b) publications resulting from the projects.

 

7. If expedient, the General Meeting shall make recommendations regarding modifications and expansion of the scope or changes in the focus of projects.

 

8. The General Meeting shall take a decision on which of the project coordinators will head the project.

 

 

§ 7 Quality Management

 

Leukonet commits itself to establish quality control mechanisms that will be constantly reviewed and improved

 

by means of:

1. Internal assessment of the subprojects at one-year intervals, which shall take place after presentation of the progress reports for each project at the annual General Meeting.

 

2. Publications resulting from clinical and basic research work conducted in the subprojects (see also presentation of Leukonet to the public).

 

 

§ 8 Publications

 

1. In the case of publications resulting from Leukonet-supported research activities or from collaborations with Leukonet, the Network shall be included in the Acknowledgment sections of any such publications.

 

2. It shall be the policy of authorship of Leukonet to list only those authors in scientific publications of the Network who substantially contributed to the design of studies or experiments, to the collection, analysis, and interpretation of data, and to the writing of manuscripts. Furthermore, the authors are required to give their consent to any such publications and to take responsibility for them. These guidelines are based on the Recommendations for Good Scientific Practice of the German Research Council (Deutsche Forschungsgemeinschaft, DFG) (http://www.dfg.de/aktuell/download/empf_selbstkontr.htm) and on similar guidelines and recommendations of the Leibniz Gemeinschaft, WGL, which are based on guidelines on Good Scientific Practice at the German Primate Center (Deutsches Primatenzentrum, DPZ) in Göttingen (http://www.dpz.gwdg.de).

 

 

§ 9 Public Relations

 

1. All Members of Leukonet commit themselves to participate in public relations work.

 

Public relations work includes:

 

1.1 Dissemination of information to the public, in particular to patients and their families, via Leukonet’s home page.

 

1.2 Publication of summaries (abstracts) and reports on results of the individual projects by the heads of the subprojects, either via Leukonet’s home page or appropriate publishing media.

 

1.3. Reports on the annual General Meeting and other activities of the Network, and publication of any such reports either via Leukonet’s home page or appropriate publishing media.

 

2. The headquarters of the Network shall be informed of any information intended to be made public in the name of Leukonet. Any measures planned shall be submitted to the Managing Committee two weeks in advance. The Managing Committee shall give its final comments within two weeks after notification of the measures planned.

 

 

§10 Cooperation and Exploitation of Results

 

1. When cooperation agreements are concluded with partners new to the Network (e.g., cooperation with industrial enterprises), all rights and obligations toward the BMBF or its PT, as stipulated in the notification of appropriation of funds, shall also be part of the agreement with the new partners. Any agreements intended to be concluded shall be submitted to the Managing Committee for approval at least six weeks in advance. The Managing Committee must give its final comments within six weeks following notification of the planned agreements.

 

2. Guidelines governing the exploitation rights of the results and applications for patents form part of the plans for exploitation of the results of the individual subprojects. If necessary, these plans shall be updated once a year. Notification of any such changes shall be provided.



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