Hospital Sant Joan de Déu
Sharing to move ahead

How we work

The dynamics of collaboration in Rare Commons are simple:

  1. The process begins with the reading of a chapter about an organ or bodily system affected by the disease. All of the chapters may be printed out, and each of them concludes with a helpful summary of the most important information it contains. 

  2. Fill out a medical questionnaire on the subject. Each questionnaire is preceded by a list of suggested documents to have at hand (test results, medical reports, and so on) as well as an indication of the approximate time needed to fill it out (every questionnaire may be completed at more than one sitting.).

  3. While filling in the questionnaire, you will have access to support and advice, both from the main investigators and from community activists. They will work with you to help resolve questions or uncertainties, providing guidelines for your contribution.

  4. Once the questionnaire is completed you will have access to the entire body of information provided by the community as a whole in the form of graphs and tables annotated by the team of scientific experts in each area of specialization related to the disease.

  5. Once your questionnaire is completed, you will have the possibility to read the next chapter and so on. Some of the questions in the survey will be always available to complete them with new information allowing the monitoring of each child. For instance, that will be the case of treatments.

  6. Soon, the information you provided will be integrated into the global data presented in graphs and tables, you can consult this global data whenever you want once the linked questionnaire is completed.

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