Inventory and Registry
The samples eligible for the DEGESCO registry need a minimum of information that includes their phenotype, family history of neurodegenerative diseases, age, age of onset of the disease and different cognition metrics (depending on the phenotype under study).
DEGESCO projects do not have to be signed by all members simultaneously. In each specific initiative, an explicit communication of participation from each member will be requested. Any member who agrees to collaborate in an initiative has the right to participate in the discussions and decisions made within the proposed project. These deliberations include the selection of samples (or families), the procedures to be executed, the analysis plans, the management of databases and records, as well as participation in the interpretation of results, preparation of manuscripts and choice of dissemination channels.
Access to data generated by the consortium:
- Each member of DEGESCO is responsible for both the samples and the genotypes and phenotypic data produced within their entity.
- DEGESCO members participating in a specific initiative have the right to access at any time all raw genotyping and phenotyping data generated.
- DEGESCO members not participating in a specific initiative can access the information generated with the prior explicit authorization of all the entities that have conducted the concerted action.
Communication of results to third parties
- The unsupervised supply of results or materials produced within the DEGESCO consortium to other entities outside this consortium is prohibited.
- This prohibition does not concern the internal data produced by each group but rather the common register.
- Exceptionally, DEGESCO information may be supplied to third parties. However, this will require a formal request to the CONSORTIUM and an explicit authorization from all the DEGESCO groups that participated in the preparation of the requested data.
Publication policy, authorship and acknowledgments in DEGESCO publications
- The flexibility and autonomy of the working groups will set the guidelines regarding authorship policies and the decision to publish the works that emerge from DEGESCO. The promoters of each initiative will retain the priority of each specific work and will be responsible for reaching consensus among all the parties involved in the development of the project. The decisions of each group do not need any approval from the other members of DEGESCO not involved in the initiative. As a general rule, groups are urged to take into consideration the following eligibility criteria for authors of DEGESCO works: contribution of ideas (priority), specimens, production of both genotypes and other genetic, biochemical or molecular data. The analysis of results and the writing of publications.
- Working groups are recommended to include the name of the consortium in their joint publications in order to publicly promote the initiative (e.g. “On behalf of DEGESCO: Dementia Genetics Spanish Consortium”).
- It is recommended that an agreed list be drawn up of the individuals belonging to each group and that make up DEGESCO. This list must be incorporated into the web pages of each entity and that of CIBERNED. The complete list of DEGESCO members must be cited in the acknowledgments of each article as collaborators of the initiative.