What is IPGB?
The Incontinentia Pigmenti Genetic Biobank (IPGB) of the Human Genetics Laboratory at IGB-ABT CNR in Naples is a collection of DNA samples from subjects affected by Incontinentia pigmenti 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 of 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, according to ethical and legal recommendations for biobanking, approved by the local Ethics Committee, has been obtained until now only from some of the patients or their parents and the personal details remain confidential. Actually, we are taking care to recall all patients to inform them of IPGB project and collect their specific consent to partecipate. As soon as possible all IP DNA samples will be included in the IPGB.
The access to the entire database and collection of samples is currently restricted, and to protect confidentiality, the samples are identifiable through the use of a code. Access to the data is restricted to biobank staff and is protected by a password.
Annual distribution of the IP samples that have been received by the IGB Human Genetics Laboratory at IGB-ABT CNR for molecular diagnosis from 2000 to 2013.