The NordicDiabKids

Rules and regulations

 Name of the organisation: The NordicDiabKids (from herewith: NDK or the Group)

The purpose of the group:

The NDK is committed to perform high quality collaborative research based on the childhood diabetes registries from the Nordic countries (Denmark, Sweden, Norway and Iceland) the overall aim is to improve diabetes care in children and adolescents.

Objectives

1. To stimulate and perform innovative scientific research in children and adolescents with diabetes
2. To enhance the impact of scientific research by multicentre collaboration
3. To share and compare data from registries of childhood diabetes
4. To increase the awareness of research in paediatric diabetes by presentations and publications
5. To improve through research the understanding and quality of care in children and adolescents with diabetes and by health care professionals

Members and Organisation of the NORDICDIABKIDS

 

The Nordic Study Group consists of health care professionals in paediatric diabetes or other professionals associated with the registers within a Nordic country.

Membership may change from time to time when new members are proposed by the Group.

The Group shall hold an Annual (research and organisational) Meeting in a Nordic country, where all countries are represented. The national representative should have the authority to make decisions concerning the projects that are on the agenda.

The country organizing the meeting pays for the meeting room and lunch etc. during meeting hours including dinner. Each participant pays for accommodation and travel expenses.

The Group's activities are coordinated and monitored by a Steering Group consisting of participants of last meeting with at least 1 representative from each register.

The Steering Group will elect a chairman until the next meeting – preferable the one planning the next year meeting.

The Steering Group plans the agenda for the Annual Meetings and is responsible for all negotiations with third parties on behalf of the Group between the Annual and ad hoc meetings.

Communications within the Group

Members are openly informed about planned activities by means of email communication to the Group and minutes of meetings. The members of the steering Group are responsible for distribution of information within their own country and to send information to the webside (www.dsbd.dk/NordicDiabkids). Every member is able to comment on all the planned activities and these will be considered by the Steering Group.

Responsibilities for data.

The Steering Group is responsible for the data, and responsible for data being used only for the purpose suggested in the protocols and agreed upon at an annual meeting. The Steering Group is ultimately responsible for the safe and correct storage of data.

Task Force Appointments

The Steering Group may appoint from time to time specific Task Forces to manage such tasks as the coordination of specific studies (eg. centre differences study).

A task force may be asked by the Group to acquire and develop new ideas for research, evaluate scientific proposals from external research groups, investigate the possibilities of utilising specialised research groups. The task force may then make proposals for further research at the next annual meeting. The final decision concerning the project is made at an annual meeting.

Financing of specialised research projects additional to main NORDICDIABKIDS

   

Specialised work (eg. statistics) or other expenses linked to each project is covered by each registry or specific grants for each project.

Publication and Presentation strategies

 

Specific members will have been identified as the protocol team and main drivers for particular research studies. With the agreement of the Group they should continue to move the Study forward to its presentation in the public arena and to publication.

Early in the course of each study the Group should identify:

-        a team of members who shall be responsible for overseeing the comparison and analysis of data

-        members who shall be responsible for constructing abstracts and be first authors for presenting data at scientific meetings

-        members who should be the main drivers for writing up results (the writing teams)

-        the member who shall be responsible for submitting an abstract to a Scientific Meeting or paper(s) to a chosen journal and who is the “author for correspondence” for the journal.

-        Generally two authors from each registry are in the author list, the country with main responsibility may contribute with three authors. Authorship has to be decided when the final protocol is accepted.

If a registry only provides one author for the paper, other registries may participate with more than two. If the steering Group finds that projects are not proceeding sufficiently, the national registry has to find a replacement.

All presentations of data have to include all co-authors and that it is on behalf of the NordicDiabKids.

Journal publications

During the development of publishable papers, draft copies must be sent to all defined authors. Each country is responsible for further distribution within their own country. Every member of the registries in the four Nordic countries may be a part of a writing team.

The publishing philosophy of the Group includes the following:

-        that papers published on behalf of the NDK should have consensus agreement for publication by all members whose names appear on the publication

-        that core research data should be published in major journals with the highest achievable impact factors, reaching the largest possible diabetes related audiences

-        the decision on which journal should be chosen for submission will usually be taken by the writing team in consultation, whenever possible, with the membership.

Major publications should submitted to journals with the names of all contributing members as co-authors to be included under the title of the research. Several key writers and contributors will be the first authors followed by the list of all contributing members.

The “author for correspondence” will always request that the editors publish all members names under the title.

Within the title or sub-heading a statement should be inserted “on behalf of NordicDiabKids”.

When there is a refusal by the editors of a journal to include all the NDK members names as authors below the title of the article a majority decision has been made in consultation with all members, that instead of an author list the statement should be inserted

“NordicDiabKids” but then ALL authors, contributing members and other contributors, with affiliations, must be listed as an appendix.

Presentations to scientific meetings

As with the development of publishable papers, the writing group will be responsible for the design and construction of abstracts for posters and oral presentations to scientific meetings. Whenever possible these should first be sent to members for comment and review.

Moreover all presentations, whether poster or oral, should acknowledge the names of all members of the Group who have contributed the research study.

When an abstract is accepted for presentation the abstract will be sent to the Chairman of the Steering Group and send attached to a mail for all participants at the last meeting.

Steering Group marts 2014