2. IgAN Consortium website

Record Control Number: Quality Validation Date: Update Date:
33334 2004-07-29 2004-10-08

Abstract: The IgAN consortium has created a website ( for public dissemination and confidential sharing of the results achieved by the Consortium.

The website contains three sections:
1) Information;
2) Registry;
3) News. Section 1 and 3 are available for public vision.

They are dedicated to the exploitation and dissemination of data on IgA nephropathy obtained by the IgAN Consortium.

Section 1 contains a booklet, which includes the definition of the disease as a sporadic form and a familial or a suspected familial form. In addition, there is the definition of affected, probably affected and unaffected subjects belonging to these families. There are the guidelines for the collection of blood samples, which will be stored in the Biobank. The booklet contains letters of information about the disease and an informed consent to be used for the collection of blood samples.

Section 3 is dedicated to the dissemination of data obtained by the IgAN Consortium since the constructed Biobank is the unique DNA bank on IgA nephropathy available in the world.

IgA nephropathy is the most frequent worldwide glomerulonephritis and 20-40% of subjects affected by this disease receive renal replacement therapy 20 years after the onset of the disease. The disease involves young subjects and this means that socio-economic aspects represent major points of the disease.

The section No.2 contains the Registry which is the core of the website for basic and clinical research. The database is accessible only to the partners of the IgAN Consortium, who have received a valid password.

Subject Descriptors: Medicine; Communications networks; Distributed databases; Information processing
Subject Index Codes: Medicine, Health; Telecommunications; Information Processing, Information Systems
Market Applications: Computer networks, conferencing
Stage Description: Continuously updated and implemented.
Collaboration Sought: Further research or development support; Joint venture agreement; Information exchange/Training; Venture capital/spin-off funding; Private-public partnership; Available for consultancy
Collaboration Detail: Partners of the IgAN Consortium wish to collaborate with scientific agencies which are devoted to dissemination of information from DNA Biobank and to involve scientists in genetic studies.
Sources of Support: CEC
Remarks: Results e TIP
Intellectual Property Rights: Copyright(s) registered

Contact Details
Contact Name: SCHENA, Francesco Paolo (Professor)
Position: Head of Nephrology Unit
Department: Department of Emergency and Organ Transplantation
Contact Organisation: University of Bari
Address: Piazza Giulio Cesare, 11
City: Bari
Region: SUD
Postcode: 70124
Country: ITALY
Telephone Number: +39-080-5592237
Fax Number: +39-080-5575710

Related Programme(s) / Project(s)
Project Reference
Project Title
LIFE QUALITY QLG1-CT-2000-00464 Development of a genomic DNA bank of IGA nephropathy (IGAN) patients and family members. New trends in genetics for the early diagnosis of familial IGAN

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