Data collection of the Estonian Genome Project has spread to 12 counties

The Estonian Gene Bank receives the data - blood samples and filled-in health and genealogy questionnaires - of approximately three hundred gene donors from twelve Estonian countries a week. Four thousand people have become gene donors and about 170 doctors have been involved in the data collection process of the Genome Project. Although most of the data collectors are family doctors, specialist doctors have been gradually included in the collection of additional data as well. "The database of the Gene Bank is increasing and we have already started analysing the collected health data," noted Ms. Krista Kruuv, Chairman of the Management Board of the Estonian Genome Project Foundation. "This is necessary for ensuring the quality of the data and for developing the information technology capacity of the database. The research value of the Gene Bank is higher if it contains data of people with diverse health statuses and therefore we have launched collection of additional data about various disease groups." The increase in the data collection speed has been fuelled by adjustments and developments made on the basis of the experiences gained from the pilot project. The pilot project was conducted from October last year to February this year in Tartu, Saare and Lääne-Viru Counties. The Estonian Genome Project Foundation made the data collectors' training programme more efficient, improved IT solutions and the data collection programme. The activities of each doctor upon launching and carrying out data collection were planned better, too. Doctors work with gene donors outside their reception hours. To ensure constant high-quality data collection and processing, the Foundation started developing a quality management system in 2001. At the end of August, Bureau Veritas Quality International, which has won a competitive tender, conducted a certification audit of the management system of the Foundation, which proved to be successful. In the first week of September, the Estonian Genome Project Foundation received an international certificate, which confirms that the management system of the Foundation is in conformity with the ISO 9001:2000 quality standard. "Besides a data processing permit issued by the Data Protection Inspectorate, the quality certificate is another very important document," said Ms. Kruuv. "This shows that the Gene Bank is reliable and in accordance with international quality requirements." Data collection and processing has been conducted by the Foundation for about a year. Ms. Krista Kruuv gave an overview of it at an international Gene Forum held in Tartu during 12-13 September. At the same forum, Mr. John Newton, Head of the UK Biobank, and Mr. Struan Grant, representative of Iceland's gene project, participated in a session on biobanks, chaired by Professor Andres Metspalu. Aire Koik Head of Information Estonian Genome Project Foundation