Research data access

As of now, data will be collected by means of the online survey from as many individuals and families with SN in as many countries as possible until June 30th. This will be extended by no more than two weeks for countries who joined the project late: Brazil, Czech Republic, Greek, Iran, Portugal and the Spanish-speaking countries of South America and the Arabic speaking countries of the Middle East and North Africa. The data will be collected and tidied (when necessary) at the chEERS Lab, UniDistance & University of Fribourg Switzerland (PI Andrea Samson). As soon as possible after this date (and no later than July 31st 2020), an overview of the general demographics of the cohort will be made available to the collaborators. For example, the number, age and gender of participants in each country, the number, age and gender of participants in each SN group, etc.

From this date, work will begin on a general summary article which will include all the collaborators. Each collaborator will be invited to co-author this paper that will be led by the principal investigators. Except for the principal investigators, the co-authors will be listed alphabetically. During data collection, and particularly once the cohort demographics are known, we invite all collaborators to contact the principal investigators with as clear an indication as possible of the data they would like to access (which questions and variables). This can be found in the Data Request Form available at the bottom of this page and includes a plan of what you intend to write, how you intend to analyze the data, the names of probable co-authors, and where you would like to publish it. We will begin considering all the plans together we have received on July 16th 2020 with a view to distributing the data as fairly as possible across the different collaborators. Our decisions will be made available to all the collaborators before the data is made available, in order that collaborations or new proposals can be drawn up. This would also be the time to contact us should any clarification about the decisions be necessary.

Please submit your project proposal using the Data Request Form (Click here to download the Data Request Form) with the CV of the senior author for the additional publication by email to: Once submitted, proposals will be evaluated by the PIs on the basis of the following criteria:

  1. Scientific merit

  2. Feasibility in relation to available collaboration resources

  3. The number of other proposals submitted by the same group

  4. Overlap with other research questions

  5. The applicants must be bona fide researchers with an established scientific record

The entire database will be made available to researchers from outside the present collaboration on the OSF from May 30th 2021.

The data will have been obtained in confidence and anonymously from study participants. As such, the database does not contain any individual identifiers such as names, addresses, telephone numbers, etc.

The data cannot be used for commercial purposes. Data will only be shared through the process outlined above. Only applications from bona fide researchers with an established scientific record will be considered. This approach ensures the reputations of the principal investigators and the collaborators, and that the participants are not compromised through unethical, premature or opportunistic data analysis. It involves high quality, ethical projects for research purposes using rigorous scientific methods. There must be an intention to publish the research findings for wider scientific and eventual public benefit, without restrictions and with minimal delay. Bona fide researchers, by definition, have a formal relationship with a bona fide research organisation, which is an established academic institution, research body or organisation with the capability to lead or participate in high quality, ethical research. It is not a requirement that research is the primary business of that organisation, or that the organisation is publicly financed. In this context, a public-private partnership may qualify as a bona fide research organisation.