Periodic Reporting for period 1 - CY-Biobank (Biobanking and the Cyprus Human Genome Project)
Reporting period: 2015-06-01 to 2016-05-31
The genetic investigation of diseases and eHealth are a priority of the Smart Specialization Strategy of Cyprus. The strategy can best be served by creating a Centre of Excellence (CoE) with two pillars: a) A contemporary Biobank research infrastructure that incorporates eHealth; b) a state-of-the-art research facility to develop the Cyprus Human Genome Project and drive translational research, focused on genetic diseases, thus enhancing the European Research Area.
Biobanks are organized collections of medical records and biospecimens, aimed to support biomedical research, serving as repositories and distribution centers. Cyprus started a Biobank only 5-years ago, with competitive funding by the Cyprus Research Promotion Foundation. The CY-Biobank shall upgrade the current infrastructure, implementing high standard ISO-certified procedures and quality management systems for safeguarding data and material of the highest reliability, for downstream investigations. The CoE will embrace the whole research community of Cyprus and serve as an incubator for innovative ideas and research, and as a tertiary medical and educational institute for the rare monogenic and frequent complex disorders, aimed at better patient care, new therapeutics and precision medicine. The CY-Biobank will adopt a patient-centric approach respecting sensitive ethical, legal and social implications, with the involvement of all stakeholders in the medical and patients’ communities. The CoE aspires to play a national and a regional role by forming the MediEuro Network with countries in the Mediterranean and the Middle East, thus complementing efforts for bridging EU to this part of the world. The Advanced Partners are the Medical University of Graz that coordinated the preparatory phase of the project for Biobanking & BioMolecular resources Research Infrastructure (BBMRI) and its subsequent European Research Infrastructure Consortium, BBMRI-ERIC, which represents the largest family of Biobanks in Europe.
Biobanks are organized collections of medical records and biospecimens, aimed to support biomedical research, serving as repositories and distribution centers. Cyprus started a Biobank only 5-years ago, with competitive funding by the Cyprus Research Promotion Foundation. The CY-Biobank shall upgrade the current infrastructure, implementing high standard ISO-certified procedures and quality management systems for safeguarding data and material of the highest reliability, for downstream investigations. The CoE will embrace the whole research community of Cyprus and serve as an incubator for innovative ideas and research, and as a tertiary medical and educational institute for the rare monogenic and frequent complex disorders, aimed at better patient care, new therapeutics and precision medicine. The CY-Biobank will adopt a patient-centric approach respecting sensitive ethical, legal and social implications, with the involvement of all stakeholders in the medical and patients’ communities. The CoE aspires to play a national and a regional role by forming the MediEuro Network with countries in the Mediterranean and the Middle East, thus complementing efforts for bridging EU to this part of the world. The Advanced Partners are the Medical University of Graz that coordinated the preparatory phase of the project for Biobanking & BioMolecular resources Research Infrastructure (BBMRI) and its subsequent European Research Infrastructure Consortium, BBMRI-ERIC, which represents the largest family of Biobanks in Europe.
Main Activities-Tasks: The Project Management Committee and supporting personnel at the Partners organizations invested the most part of their activity in acquiring the information and data required for preparing the Deliverables of the Phase 1 CY-Biobank project. This enabled us to achieve the set of Objectives and at the same time facilitated the preparation of the material for the Business Plan and the Research Proposal for Phase 2.
This activity included numerous contacts and meetings with major stakeholders, those being the Ministries of Health and Finance, the Directorate General of the European Programs Coordination and Development, the Cyprus Medical Association, the Pancyprian Federation of Patients Associations and Friends and other patients’ associations, other faculties from the University of Cyprus and the Cyprus University of Technology and ALL small and larger research or medical establishments in Cyprus that we considered should be aware and involved in this project for Cyprus. Also, we held several workshops with presentations/lectures from representatives of all Partners, regarding Biobanking in the current era in Europe and the challenges we have ahead of us, despite the fact that we are building on an existing small Biobank repository that the PI has been coordinating since 2011. We had important contacts with representatives of pharma industry and with major academic centers that either on their or our initiative sought to invest in our Biobanking project partly based on the positive prospects and the good quality of material already existing and soon to be enhanced, in the field of genetic disorders.
Main Results Achieved: It was particularly and utterly rewarding that all stakeholders viewed with great enthusiasm this prospect for the future of medicine and medical research in Cyprus and embraced our effort as a common project. The patients’ organizations, as major stakeholders in this endeavor, not only participated and expressed opinions on the overall future goals but also they demanded to be part of it from the beginning and all the way to its realization, adopting a positive active role rather than the position of a passive bystander.
Our contacts persuaded the Cyprus Government to increase the initial contribution of €3mi to €15mi, to be invested over a horizon of 15 years, thus offering remarkable and decisive financial support towards long term sustainability of the project. This in itself is a perfect demonstration of the commitment of the Cyprus Government to back the CY-Biobank project, convinced of its benefit to all citizens. Similarly, the host organization, University of Cyprus, committed another €5mi for the next 10 years, for building and maintaining all physical premises and basic administration of the Molecular Medicine Research Center. Once the MMRC is up and running, the UCY will continue the support in the foreseeable future.
Other important achievements have been the Letters of Support or Collaboration from two major pharma industries, namely Regeneron and Pfizer in the USA, in addition to very promising collaborations and potential funding with the Broad Institute, a chief research institute of Harvard and MIT in the USA, and with the Perelman School of Medicine, University of Pennsylvania, Phila, USA. Additionally, a strong Letter of Support was obtained from the Fetal Medicine Foundation in London, UK, for record and perhaps sample archiving at the Biobank, through the eHealth platform.
Upon the initiative of the PI, the Ministry of Health received a mandate by the Cyprus Parliament to work out and prepare the legal statutes pertaining to the operation of Biobanks in Cyprus. Also, again upon the initiative of the PI, Cyprus applied and became Observer to the BBMRI-ERIC, the largest family of Biobanks in Cyprus, with many benefits emanating from this membership. Prof. C. Deltas is the representative to BBMRI-ERIC Assembly of Members.
This activity included numerous contacts and meetings with major stakeholders, those being the Ministries of Health and Finance, the Directorate General of the European Programs Coordination and Development, the Cyprus Medical Association, the Pancyprian Federation of Patients Associations and Friends and other patients’ associations, other faculties from the University of Cyprus and the Cyprus University of Technology and ALL small and larger research or medical establishments in Cyprus that we considered should be aware and involved in this project for Cyprus. Also, we held several workshops with presentations/lectures from representatives of all Partners, regarding Biobanking in the current era in Europe and the challenges we have ahead of us, despite the fact that we are building on an existing small Biobank repository that the PI has been coordinating since 2011. We had important contacts with representatives of pharma industry and with major academic centers that either on their or our initiative sought to invest in our Biobanking project partly based on the positive prospects and the good quality of material already existing and soon to be enhanced, in the field of genetic disorders.
Main Results Achieved: It was particularly and utterly rewarding that all stakeholders viewed with great enthusiasm this prospect for the future of medicine and medical research in Cyprus and embraced our effort as a common project. The patients’ organizations, as major stakeholders in this endeavor, not only participated and expressed opinions on the overall future goals but also they demanded to be part of it from the beginning and all the way to its realization, adopting a positive active role rather than the position of a passive bystander.
Our contacts persuaded the Cyprus Government to increase the initial contribution of €3mi to €15mi, to be invested over a horizon of 15 years, thus offering remarkable and decisive financial support towards long term sustainability of the project. This in itself is a perfect demonstration of the commitment of the Cyprus Government to back the CY-Biobank project, convinced of its benefit to all citizens. Similarly, the host organization, University of Cyprus, committed another €5mi for the next 10 years, for building and maintaining all physical premises and basic administration of the Molecular Medicine Research Center. Once the MMRC is up and running, the UCY will continue the support in the foreseeable future.
Other important achievements have been the Letters of Support or Collaboration from two major pharma industries, namely Regeneron and Pfizer in the USA, in addition to very promising collaborations and potential funding with the Broad Institute, a chief research institute of Harvard and MIT in the USA, and with the Perelman School of Medicine, University of Pennsylvania, Phila, USA. Additionally, a strong Letter of Support was obtained from the Fetal Medicine Foundation in London, UK, for record and perhaps sample archiving at the Biobank, through the eHealth platform.
Upon the initiative of the PI, the Ministry of Health received a mandate by the Cyprus Parliament to work out and prepare the legal statutes pertaining to the operation of Biobanks in Cyprus. Also, again upon the initiative of the PI, Cyprus applied and became Observer to the BBMRI-ERIC, the largest family of Biobanks in Cyprus, with many benefits emanating from this membership. Prof. C. Deltas is the representative to BBMRI-ERIC Assembly of Members.
The development of the CY-Biobank phase 2 project shall have unprecedented impact on medicine, medical research and health care delivery in Cyprus. With an estimated budget of more than €60mi over 15 years (€36.3 mi during the first 7 years), this is the largest research project ever implemented in the country in the medical field which combines patient care and follow up, translational research in genetic diseases and creation of prospects for better diagnostics, clinical trials and development of new therapeutics. With the aim to archive more than 32,000 donors in the first 7 years of project duration, in a contemporary Biobank infrastructure, in compliance with high European standards and registered with BBMRI-ERIC, our Biobank will serve as a hub in the Mediterranean, reaching out to other neighboring countries through the MediEuro Network we started already with ten labs/clinics in eight countries. The high quality data/material archived and soon to be enriched with much greater numbers, has attracted the interest of pharma industry and other academic parties who look forward to taking advantage of its unique features, in the search for disease biomarkers, new diagnostics and therapeutic targets.
In regards to the socio-economic impact this is anticipated to be enormous, in terms of better patient care, faster and correct diagnostics, saving money through preventive health care policies at wide public level. Finally, the decision to operate this Biobank through a common national Biobanking node, creating the Cyprus.cy node, will also avoid fragmentation or duplication of resources and effort to the benefit of all.
In regards to the socio-economic impact this is anticipated to be enormous, in terms of better patient care, faster and correct diagnostics, saving money through preventive health care policies at wide public level. Finally, the decision to operate this Biobank through a common national Biobanking node, creating the Cyprus.cy node, will also avoid fragmentation or duplication of resources and effort to the benefit of all.