The first Poland Syndrome Registry is online!
AISP has been promoting the creation of the first Poland Syndrome Registry together with the aforementioned clinical centres.
What is it?
The National Poland Syndrome Registry is a tool to collect and monitor personal and clinical data of people affected by Poland Syndrome, in compliance with the current data protection regulation.
What is it for?
The National Registry is a very useful tool both for the individual and the whole community. By taking part in the Registry each patient has a complete and easily accessible collection of his/her clinical data available. The information gathered allows to understand the trend and development of the syndrome and can help to improve diagnosis and treatment. Consequently, scientific research is fostered in order to define the most updated and specific care and treatment methods. Moreover, this data collection provides AISP with useful information on how to address the association priorities. Reference centres can be strengthened in areas with greater lack, in accordance with the care needs of the territory emerging from the data analysis.
Participate in the project
Data Protection
The IT infrastructure is compliant with all the legal requirements relating to data processing and privacy.
Accessibility
The company Cloud-R has developed the Registry with a cloud-based software platform in SaaS mode. It displays a user-friendly web interface, specifically conceived for immediate participation of both patients and doctors. Its IT infrastructure grants future growth through the addition of new modules and functions. The platform interoperates with other available tools for biomedical research in rare diseases. The Biobank, another scientific project supported and managed by AISP, is one of this tools and consists of a collection of biological samples of people affected by Poland Syndrome.
The Scientific Committee
Dr. Ilaria Baldelli, Policlinico San Martino, Genoa
Federico Bardi, Vice President of AISP, Pisa
Dr. Maria Francesca Bedeschi, Policlinico of Milan
Dr Maria Grazia Calevo Istituto Giannina Gaslini, Genoa
Dr. Nunzio Catena Paediatric Hospital Cesare Arrigo Alessandria
Dr. Michele Torre, Istituto Giannina Gaslini, Genoa
Eva Pesaro, President of AISP Genoa
Prof. Pierluigi Santi, Policlinico San Martino, Genoa
Prof. Marta Tomasi, University of Trento
Registry Manager, Dr. Marco Crimi DPO
Lawyer Francesca Carli
For more information Email: registrosdp@sindromedipoland.org
Tel. 0039 0105222238
