Even in the healthcare field, the combination of data makes it possible to obtain better information, fundamental for research and valuable for doctors and patients in defining the treatment path.

This is even more important when dealing with the study and treatment of rare diseases, i.e. diseases that, according to the criteria adopted in the European Union, have a distribution of less than 5 cases per 10,000 people.

In these cases, the treatment of patients suffering from these diseases appears to be more complicated due to the insufficient data relating to the specific disease and the onerous nature of treatments that meet a limited demand.

Patient records and databases can be further developed and enhanced to improve clinical research in the field of rare diseases, patient care and health planning. An effective tool for collecting, managing and integrating data, they allow obtaining samples of sufficient size for epidemiological and/or clinical research or for conducting observational studies.

In particular, the use of patient data records is essential to evaluate the feasibility of clinical trials, to facilitate the planning of appropriate clinical trials and to organize patient registration.

The data processed by a health registry are generally personal and sensitive data, so the processing carried out by the database provider must comply with high standards of privacy and security and establish a relationship of trust with the patients involved. Personal data may be when the legal basis on which the processing is based allows it or they may be anonymized to share such data with patient associations and researchers for secondary research purposes.

Cloud-R is a startup that develops software solutions for rare disease registries through the creation of patient communities. The sharing of patient data is the core business of Cloud-R, which bases its activity on the ethical purpose of making knowledge and information available to other stakeholders even outside the context in which the data are collected in the first instance, and therefore for secondary purposes, and at the same time to find new financial resources, which today are not available for this type of independent research.

Thanks to a large participation of people and reliable technological solutions where patient privacy is an essential element, Cloud-R has been able to prepare a business model that allows it to bear the IT structure and process costs, as well as potentially also covering all the costs of data entry and data monitors, which are usually covered by the participating centers and the promoter and allows the medium-long term record to be kept, essential to support research projects.

In the third episode of Data & Co. — Opportunities with Data, we had the pleasure of hosting Ruggero di Maulo, CEO, and Alfredo de Felice, DPO of Cloud-R, to talk about the registry supporting the observational studies on rare diseases they have developed, how they manage patient data processing and how they have made their business model sustainable.

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