Nordic-CLL Study Group: The new organization
The Nordic CLL Study Group (NCLLSG) is the umbrella organization for the national CLL groups of Denmark, Finland, Iceland, Norway, and Sweden. Its main objective is to facilitate clinical trials and education in Nordic countries. Research is open or through a network of CLL Study Centres.
Official CLL Study Centres will commit themselves to a set of procedures (see below), and will be given a unique center number to be used in studies and collaborative procedures. The study center will have influence on Nordic CLL studies during the design phase, and may also receive support from NCLLSG, if possible. The NCLLSG Steering committee will perform the administrative tasks.
Procedures for NCLLSG Study Centers
- Representatives from the centers will be invited to “protocol meetings” (face to face or electronic) to discuss the design of proposed new protocols.
- During the design phase of a new protocol, study centers have the opportunity to express their degree of interest in the study to the steering committee. Based on the quality and novelty of a study, and the interest expressed by the study centers, the steering committee will eventually reach a recommendation whether or not the Nordic CLL Study Group should participate in a trial, thus making it a “NCLLSG trial”. Although a Nordic CLL study center may participate freely in any trial available/attractive, it is recommended that trial offers be redirected to the Steering Committee for Nordic coordination.
- When a Nordic CLL Study center has committed itself to a study, it is expected to include all eligible patients in the study.
- A Nordic CLL Study center should stay in regular contact with the NCLLSG steering committee regarding the status of on-going studies, and of problems arising regarding inclusion
Role of Nordic CLL SG steering committee
- will consist of representatives from Sweden, Norway, Finland, Denmark, and Iceland, including both clinical and translational CLL researchers. The Steering Committee should include the chairmen or other representatives of the national CLL groups. The group constitutes itself with a chairman, a secretary and a treasurer. The committee members will serve for two years, and can subsequently be reelected or replaced according to decisions of the national CLL groups
- is responsible for the economy of Nordic CLL SG including sponsor agreements with the industry and applications for general research grants. If possible Nordic CLL SG will distribute economical resources to the study centers. The treasurer will circulate the balances of the account regularly.
- will register centers which apply to be a Nordic CLL SG Study Center, and will provide every center with a unique center number
- will report center-based statistics regarding participation, inclusion rate etc in on-going studies, as well as other news at the website
- may arrange regular “Nordic CLL meetings” aiming to promote research and education. Such meeting will have to be funded from public or industrial sources.
- might coordinate the national guidelines of the Nordic countries.CLL guidelines. The national guidelines are the responsibility of the national CLL groups.
- will maintain a website: Nordic-CLL.org with a section to the public and sponsors, and a closed section for members (steering committee and study centers)