IRIS - Draw (up to 11) - ANIRIDIA STORIES: INVESTIGATING CONGENITAL ANIRIDIA THROUGH NARRATIVE MEDICINE

Investigation tool for the caregiver of the person with aniridia - Privacy

Dear Sir/Madam,
we are carrying out the project IRIS- Aniridia Stories: investigating congenital aniridia through narrative medicine. The project, carried out by ISTUD S.r.l., in collaboration with ANIRIDIA-NET, aims to collect the narratives of people with congenital aniridia, their family members and/or caregivers.
Your participation is a valuable contribution to hearing the voice of those who experience this condition.
We therefore ask for your consent to take part in the activity of collecting the narratives within the framework of this project. We inform you that:
(a) The narratives will be completely anonymous and cannot be traced back to you or any other individual.
(b) No names of medicines or active ingredients, even if used by you, may be mentioned in the narrative.
(c) The collected narratives will be analysed anonymously, will result in a research report and may be presented in aggregate and/or not aggregate in congresses, scientific publications, lay press, educational activities, publishing projects.
For all eventualities, please refer to the project coordinator Francesco Minetti, at the e-mail address fminetti@istud.it.
We hereby inform you that, pursuant to Article 13 of Legislative Decree no. 196/2003 and Articles 13-14 of EU Regulation/2016/679, we hereby provide you with the following information
(a) ISTUD S.r.l., with registered office in via P. Giannone 9, Milan, will process, as Data Controller, your personal and - where present - sensitive data, in an anonymous format. Your narrative will be included in a report, in an anonymous format and deprived of any reference that may lead back to persons and places. We also inform you that the Azienda Socio Sanitaria Territoriale Degli Spedali Civili di Brescia as a participating clinical centre and ANIRIDIA-NET, will process your personal and - if present - sensitive data in an anonymous format exclusively for the purpose of fulfilling legal and regulatory pharmacovigilance obligations. With regard to the latter purpose, ISTUD S.r.l. is appointed as External Data Processor pursuant to the regulations in force. Your data will be processed, as described above, for the entire duration of the project and for the period strictly necessary for your participation in it.
(b) Your data will be processed anonymously for the purposes indicated, and will be processed by computer and/or manually, in accordance with logical and functional criteria for the purposes for which the data will be collected, in compliance with the rules of confidentiality and security provided for by current legislation and internal policies on the protection of personal data.
(c) We would like to remind you that the provision of data is optional. Failure to consent to the processing, in the manner described above, of the data in question will make it impossible to participate in the IRIS project.
(d) The Project is aimed at the creation of a collective work and, as such, falls under the provisions of art. 10 of L. no. 633/1941 on copyright. Without prejudice to the moral right of copyright, what you create during the project will become the property of ISTUD S.r.l. and ANIRIDIA-NET. To this end, You declare to cede to the latter the relative copyrights. It is understood that the Publisher of the designated journal shall acquire the rights of publication and reproduction (copyright) on the final document containing the collection of stories, in accordance with the editorial regulations in force.
(e) You may exercise at any time the rights provided for in Article 7 of Legislative Decree no. 196/2003 and EU Regulation/2016/679 (access, rectification, cancellation/oblivion, limitation, opposition, portability, revocation, complaint to the Control Authority-Privacy Guarantor), by contacting the Data Controllers, identifiable in relation to the purpose of the collection, at rpd@asst-spedalicivili.it or areasanita@istud.it.

1. For Parent

Having taken note of the purposes of the research project and having read the information notice pursuant to Art. 13, Legislative Decree no. 196/2003 and Articles 13-14 of EU Regulation/2016/679, concerning the processing of personal and sensitive data for the purposes and in the manner set out above, I hereby give my consent to the processing of my personal data for the above purposes: *This question is required.

2. Taking note of the aims of the research project:
*This question is required.