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RING 14 NON-PROFIT ASSOCIATION
HELP AND RESEARCH FOR CHILDREN WITH RARE GENETIC DISEASES

Please make a donation

Please make a donation



DATABASE PROJECT

The clinical data of RING14 Association children is important to understand which symptoms are connected to this syndrome, to stimulate and develop transactional research in the genetic and clinical field to provide doctors with precious information for better treatment of these young patients.
Families from all over the world have taken part in this project by sending a copy of their child's medical file for the Association to collect, safeguard carefully in accordance with legislation governing the handling of sensitive data and entering them into the Database.
In 2010 a new clinical software was developed whose website platform is accessible via password that can be requested from RING14.
The data stored in it is subdivided into these macro areas: GENETIC – GROWTH AND DEVELOPMENT – NEUROPSYCHIATRY AND NEUROLOGY – DISEASES AND MALFORMATIONS OF VARIOUS SYSTEMS – PHOTOS – PHARMACOLOGICAL THERAPIES – HOSPITALISATION– TESTS AND TREATMENT.
The data systematised and can therefore be selected in statistics and discriminated by ad hoc personalised parameters, and they can also show the complete histories of individual patients.
The software makes it possible to enter attachments like photos, videos, EEG, MRI tracings and reports.
It also makes it possible to manage follow-up clinical data, so that the onset or disappearance symptoms at specific ages can be tracked.
All of the data collected is entered by a physician to guarantee the quality and precision of the scientific work.
Families can access their child's file and print the complete history, through a password.
The Database is the property of RING14 Association.
This Database and the collection of blood samples stored at the Galliera BioBank http://www.ring14.org/eng/341/biobank/ are important instruments that are available to the international scientific community to develop research on all of the syndromes to chromosome 14.
The access it, all you have to do is register on the website http://www.ring14.org/questionario/it, attaching a letter of intent or a scientific project to request access to the data.
The Database is available in the main languages but the reports attached will inevitably be in the patient's reference language.

THE ASSOCIATION FAMILIES WHICH HAVE NOT YET PARTICIPATED IN THE PROJECT ARE INVITED TO DO SO FOR FUTURE SCIENTIFIC RESEARCH. READ THE LETTER  AND SEND A COPY OF ALL OF THE MEDICAL DOCUMENTATION OF YOUR CHILDREN (EITHER HARDCOPY OR CD) WITH SPECIAL ATTENTION TO: EEG, MRI, GENETIC ANALYSES, PHOTOS AND ALL CLINICAL REPORTS AND COGNITIVE DEVELOPMENT TO THE FOLLOWING ADDRESS:
RING14 ASSOCIATION
VIA LUSENTI 1/1
42121 REGGIO EMILIA
ITALY

 

Documents

Interview with Dr. Scarano (30 KB)

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