WHAT THE MONEY WILL BE GOING TO.
IPGB Biobank
IPGB Incontinentia Pigmenti Genetic Biobank
The Incontinentia Pigmenti Genetic Biobank (acronym: IPGB) of the Human Genetics
Laboratory at IGB-ABT CNR in Naples is a collection of DNA samples from subjects
affected by Incontinentia pigmenti (OMIM#308300) continuously collected during a 13-
year experience as the main Italian centre of expertise for the molecular analysis of IP. To
date 387 DNA samples from subjects affected by Incontinentia pigmenti from International
, European and Italian genetic centres are stored in the bank. All the samples are devoid o
f any personal information and can be identified only through the use of a code. Molecular and clinical data on each subject have been saved in a database with information referring to code number, clinical history, diagnostic status and sending institution. The appropriate consent has been obtained from the patients or their parents and the personal details remain confidential. Access to the entire database and collection of samples, is currently restricted, and biobank tools are under construction and not yet publicly available.
Laboratory at IGB-ABT CNR in Naples is a collection of DNA samples from subjects
affected by Incontinentia pigmenti (OMIM#308300) continuously collected during a 13-
year experience as the main Italian centre of expertise for the molecular analysis of IP. To
date 387 DNA samples from subjects affected by Incontinentia pigmenti from International
, European and Italian genetic centres are stored in the bank. All the samples are devoid o
f any personal information and can be identified only through the use of a code. Molecular and clinical data on each subject have been saved in a database with information referring to code number, clinical history, diagnostic status and sending institution. The appropriate consent has been obtained from the patients or their parents and the personal details remain confidential. Access to the entire database and collection of samples, is currently restricted, and biobank tools are under construction and not yet publicly available.
Who Sponsors the IPGB biobank?
The Biobank may be sponsored and funded by patient organizations, academic institutions, governments, or biopharmaceutical companies.
The IPGB Biobank now is under-construction: we are looking for Sponsor Corporations able to support the maintenance, data collection, data management, statistical analyses and regulatory review. Strict operating procedures and guidelines used for biobanks and for databases in compliance with local and international privacy regulations will be applied. The goal is to improve the understanding and treatment of IP disease.
HELP US!!!!
when my angel was little she was wrongly diagnosed with the herpes virus, and they said this was why her legs were covered in blisters, they sent her away with cream after cream trying to get it under control. and when the blisters wouldn't go they gave her medicine and she ended up becoming very ill and almost died. fortunately for us after a number of tests (lumber puncher, blood tests, brain scans) they re diagnosed her with IP. now with the IP BIOBANK they could find a much simpler way to diagnose children, without them having to go through so much pain and possibly not making it out the other end. Also with a IP BIOBANK we could maybe find a cure for any future unborn children, we could maybe spare any future children the suffering that our children have suffered. All we need to do is raise the money to set it all up. and to keep the funds going so we can fund the research. so please come and help us, if you cant afford a Tshirt then a small donation can be made.
USA ONLY T-SHIRT BOOSTER ENDS 09/17
https://www.booster.com/ip-biobank
https://www.booster.com/ip-biobank
WORLD WIDE (178 COUNTRY) BOOSTER ENDS 10/02https://fabrily.com/ip-biobank
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