Digital form for registering rare diseases

he Spanish registry for primary immunodeficiency (Redip) will have a new one A computerized form to align your data. This was reported by the Official State Gazette (BOE) on Monday with a cooperation agreement between the Carlos III Health Institute, the Spanish Society of Pulmonology and Thoracic Surgery (Separ), the Spanish Society of Immunology (SEI) and the Spanish Society of Pediatrics. (Eep). This form will facilitate the inclusion of new rare diseases in the registry.

“Cooperation between all these entities will be enhanced Modernization, design and operation Subordinate New computerized model for Redip. To this end, appropriate technical and legal channels will be established through specific agreements to align registration activity with data provided by the Institute, SEI, AEP and Separ, and facilitate Inclusion of new rare diseases in the registry The document stipulates strengthening research into these diseases.

The agreement was signed before Christopher BeldaDirector General of the Carlos III Health Institute; Francisco Garcia Riopresident sporadic; Marcos LopezPresident of SEI and Luis PlessaPresident of AEP.

The three specialized companies have specific powers and responsibilities to move forward with this project. On the one hand, enhancing the means and activities necessary for Develop a registry of patients diagnosed with primary immunodeficiency. In addition, Separ, SEI and AEP shall appoint representatives of the three companies to the Monitoring Committee of this Agreement on a parity basis. “Representatives of the three societies will supervise the SEI Immunodeficiency Group, which in turn will be responsible for the registration activity, the design of the developmental and specific variants to be included, the quality control of the registries, the dissemination strategy and the promotion of research on PID,” the BoE specifies.

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In addition, they will have to prepare a Document in collaboration with the Rare Disease Research Institute (IIER) on rights and duties regarding data exploitation, authorship of publications, possibility of integration of clinical trials, obligations of professionals regarding updating content for patients, cooperation in the development of the primary immunodeficiency biobank within IIER and “whatever problems arise in this cooperation.”

Commitments of the Carlos III Health Institute

he Carlos III Health Institute It also presents some obligations that must be fulfilled to implement the computerized model. First of all, it must host on its servers all the information from the contributions of specialists and expert networks in rare diseases. On the other hand, you will Legal coverage From the point of view of Organic Law 3/2018, issued on December 5, on the protection of personal data and ensuring digital rights, for data recovery. It will make it easier Access to the rare disease patient registry (RePER), to the members of the companies concerned (SEI, Separ, AEP) proposed by the representatives of the three companies in the Joint Commission, using access codes that comply with the legal regulations, in such a way that the said representatives “will act as administrators of Redip”. Finally, the Institute will cooperate with those responsible for SEI, AEP and Separ “in all those essential aspects” so that these registries meet the specific objectives for which they were created, providing all Technical and scientific coverage This is accurate.

Although it may contain statements, statements or observations from health institutions or professionals, the information contained in medical writing is edited and prepared by journalists. We recommend that the reader consult any health-related questions with a healthcare professional.

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