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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



Biobank  Project

BIOBANK PROJECT

Funding for research into rare diseases is often not the only problem. Researchers need clinical data and biological samples to study these diseases, which was not available prior to this important scientific agreement.
Biobanks are centres set up to store the genetic material of patients to make them available to researchers all over the world.
After careful examination, the Association decided on TGBN “Telethon Genetic Biobank Network” http://www.biobanknetwork.org/ and, in particular, the Biobank hosted at Galliera Hospital of Genoa http://ggb.galliera.it/
In December 2009 RING14 Association (the first association in Italy) reached an agreement with TGBN for collecting blood samples from patients and for sharing these samples with all of the international scientific community.
By collecting samples TGBN BioBank aims to offer this material for interested researchers to study so that new scientific research can be developed. To access the samples, researchers must present a precise application to “Galliera”, following the well-defined parameters of the facility to guarantee and protect patients.
Currently the updated list of the complete collection of samples collected from our families, composed of DNA and cellular lines, is published in links.
http://ggb.galliera.it/samplelist.php?ID=466 patient samples
http://ggb.galliera.it/samplelist.php?ID=467 relative samples.
In addition to collecting blood samples, the Association has collected all of the patients' clinical data and grouped them in a proprietary database that can be consulted with a formal application to the Association http://www.ring14.org/eng/120/database/

ASSOCIATION FAMILIES WHO HAVE NOT YET PARTICIPATED IN THE PROJECT ARE INVITED TO DO SO FOR FUTURE SCIENTIFIC RESEARCH. READ THE LETTER AND IMMEDIATELY CONTACT STEFANIA presidenza@ring14.it to receive the kit for the sample and the protocol for sending it.

Patients’ Associations

Photogallery

Documents

Interview with Dr. Baldo (30 KB)
Activation of cost recovery system (14.8 KB)

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