To pursue the key issue of translational research and to set roots for future basic science that may identify molecular risk markers in ARPKD patients, we established an ARPKD-specific biobank.
This biobank will include renal and hepatic biopsies, plasma, serum, urine, RNA and DNA samples from ARPKD patients.
Samples will only be collected after informed consent under Ethics Committee-proven conditions. Biobanksamples can be requested for basic research only by written application to the ARegPKD steering committee and with proven positive ethics votum.
Material of European non-Turkish centers will be stored at Hannover Unified Biobank, material of Turkish centers will be stored at Hacettepe Rare Diseases Biobank in Ankara.
The Hannover Unified Biobank (HUB) of the Medical University of Hannover under the guidance of Prof. Thomas Illig is equipped with laboratory and storage space of more than 800 m². It will include a professional databank and software, an automated sample preparation robot, an automated DNA extraction robot as well as an automated sample input and retrieval robot working.
The address of HUB is:
Hannover Unified Biobank
Hannover Medical School
Bld. J10, Raum 7410
Carl Neuberg-Str. 1
Hacettepe Rare Diseases Biobank in Ankara was established already 20 years ago. The biobank is a member of EuroBioBank, the European Network of DNA, Cell and Tissue Banks for Rare Diseases and already contains > 30.000 DNA samples with samples from families with underlying renal diseases being among the largest groups. ARegPKD storage will be organized by Ayse Yuzbasioglu.
For participating centers: Non-Turkish centers are asked to collect the samples locally first (storage at -20°C, if possible at -80°C) and hand them over during the ESCAPE meetings. Centers in Germany, Austria and Switzerland should please collect the samples locally and quickly discuss the transfer with the ARegPKD coordinators in Cologne. If you do send samples to the HUB, please advise them in advance by e-mail. Turkish centers are asked to initially store the samples (storage at -20°C, if possible at -80°C). We are currently building up the setup for storage of Turkish samples.