Benefits and commitments

Rare Commons platform allows access to a safe and secure environment under the supervision of the Sant Joan de Déu Hospital. The goal is to offer appropriate resources to encourage the development of biomedical knowledge, in cooperation with you, medical specialists treating pediatric patients affected by rare diseases.

To this end, we need a commitment from you to:

• Cooperate in the research of the disease in question by providing clinical data and personal experiences in your clinical practice. This will involve occasional questionnaires not unlike those filled out by family members, but greater in detail and complexity.
• Suggest new questions or work areas based upon hypotheses and personal clinical experience.
• Enable access to your patients so that we may construct samples that are large enough to be statistically relevant.

Rare Commons offers clinicians the following benefits and services:

• Inclusion of your patients in this research undertaking and access not only to their data, but also, when authorized by the administrator, to the data of a group of patients whose anonymity has been duly protected.
• A structured work forum in which questions and uncertainties may be addressed and hypotheses may be responded to in a participative manner by other physicians collaborating in the same community. This forum is reserved for physicians; patients and their families will not have access to it.​
• Scientific chapters. You will have access to all the educational content shared among the community of the patient families.
• Bibliography and documentation of interest: up-to-date listings of scientific articles published in the relevant domains, organized and classified by affected organs and bodily systems, with links to abstracts, and to complete articles in the case of open journals. Also included are protocols and documents of consensus from various scientific societies and institutions regarding the disorder in question that may be useful.
• The opportunity to develop scientific papers resulting from the analysis and interpretation of the data gathered in the project. In this case the criteria concerning authorship of all participating physicians will be observed. The details of these criteria will be discussed and agreed upon in each forum.

Publications

In the doctors forum it will be discussed what data is suitable to be the result of a scientific publication that can enhance the knowledge of each disease. At all times, such data will be treated in anonymous form, without being able to personally identify what information may correspond to each patient. The proposed development of publications may be undertaken and led by any participating physician in the community.

When working on developing a scientific publication ALL THE DOCTORS who have contributed data of their patients with respect to the subject matter covered and to be included in the analysis will be invited to participate in the development of the said scientific production. No one will be excluded from this invitation if they have collaborated with the data of their patient.

However, to be considered as the author of the potential scientific production,the recommended criteria will be considered by the ICMJE (International Committee of Medical Journal Editors), which recommends that the authorship is based on conducting or participating in:

1. Substantial contributions to the conception and design, or acquisition of data, or analysis and interpretation of the data;

2. Drafting of the article or critical revision of its important intellectual content ; and

3. Final approval of the version to be published.

Conditions 1, 2 and 3 must all be met.

In the event that the publication has a limit to the number of authors (which is becoming less frequent for the case of full-text articles) it will be signed as "RareCommons work group" and it will be ensured that in the citation in PubMed the detail of the members of the workgroup is displayed (see example).

Data Management

Rare Commons wants to encourage the scientific production of relevant groups of patients with rare diseases which are difficult to recruit by traditional means. Therefore, the medical collaborators of Rare Commons who want to lead a scientific development will be able to request data relating to their area of work. This activity with solely scientific purposes will be evaluated by the scientific committee and other colleagues working in the medical community of this disease, will be discussed in the forum, and if the resolution is favourable, the data required for the study will be provided, properly encrypted and anonymized. The request of the physician should collect study hypotheses, study objectives and expected results, as well as planning of the scientific production. In addition, the requirements of inclusion of the rest of doctors who participate in the platform (as detailed in the publications section) must be respected in the event that such analysis results in a scientific production.

​For further details or questions please get in touch with the Rare Commons team at the following email address: [email protected]