CAPABILITY MEETING OXFORD UK. 21st 23rd May Registered Charity Number Company Registration no:

Transcription

1 CAPABILITY MEETING OXFORD UK 21st 23rd May 2008

2 Contents Page No. Introduction to Capability 3 Agenda 4 Contact Telephone numbers 5 Delegate List 6 Hotel Details 7 Guest Accommodation 9 Venue Details: Chutneys/Oxford Town Hall/Headington Hill Hall 10 Maps 11 2

3 Introduction to Capability Project summary The number of genetic tests is growing each year and increasing knowledge about gene-disease associations will lead to new opportunities to apply genetic/genomic knowledge in practice and prevention. Before genetic tests are introduced into general practise the benefits of their use must be evaluated. Worldwide, health care systems are facing the same challenges: 1) The need to develop an evidence-based evaluation process for genetic tests or other applications of genomic knowledge in transition from research into practice. 2) The need for capacity building to enable health care systems to make effective use of genetic/genomic applications with proven clinical utility. Capability is a 3 year model project developed jointly by units 3 (Clinical Genetics, Community Genetics and Public Health) and 6 (Education) of the Network of Excellence: Genetic Testing in Europe Network for test development, harmonisation, validation and standardisation of services (EuroGentest) and by leading experts from: Argentina, Egypt and South Africa, the latter being currently engaged in major development projects to integrate genetic services in primary care and prevention in their countries. Capability will: Develop an analytic framework for evidence-based genetic test evaluation including the domains: efficacy (evidence of utility in controlled settings) and effectiveness (evidence of utility in real settings) Identify priorities for capacity building by systematic needs assessment survey Validate the project s approach by means of a demonstration project Capability s overall objectives are to contribute to the efforts to establish and sustain a worldwide harmonisation process for quality standards for the integration of genetic test/genomic knowledge applications into practices and prevention and to serve as a model project for successful, sustainable collaboration between EU research centres and centres from developing countries. 1 1 Sixth Framework Programme SSA Technical Annex: Project Summary 3

4 Agenda Wednesday 6:00pm 7:45pm 8:00pm 21 st May Arrival at leisure during the day. Check into the Randolph Hotel from 2pm those who are arriving earlier can store their luggage at the hotel and explore the city. Informal get together and drinks Hotel Lobby area Walk to the restaurant (A chance to enjoy some authentic British Cuisine) Dinner Chutneys Indian Brasserie ( Thursday From 7am 9:00-9:15am 9:15-9:30am 9:30am 10:00am 12:30pm 1:30pm 22 nd May Breakfast at the hotel Assembly in the hotel lobby and walk to Oxford Town Hall Coffee Welcome and Introductory Remarks Irma Nippert CAPABILITY project leader Needs Assessment Report (Arnold Christianson) Clinical Utility Report (Joerg Schmidtke) Discussion: How to integrate recommended approaches into the demonstration reports LUNCH Partners Reports Arnold Christianson Cristina Barreiro Jörg Schmidtke 3:30pm TEA 4:00pm Presentation by EuroGentest Units: Information to Patients Quality and Communication Celine Lewis (Unit 6) 4:45pm Update from EuroGentest Rosalind Hastings (Unit 1) 5:30pm 6:30pm 7:00pm Return to hotel Assemble in the hotel lobby for transport to Dinner Dinner at Headington Hill Hall 4

5 11:00pm Friday From 7 am 8:30-8:40am 8:45-9:00am 9:00am Return to hotel 23 rd May Breakfast at the hotel Assembly in the hotel lobby and walk to Oxford Town Hall Coffee Health Care Needs Assessment and Prioritisation (Andrew Stevens Birmingham University) New Networking Projects (Chaired by Ulf Kristoffersson/Irma Nippert) Genetic Testing in Emerging Economies: An international survey in collaboration with the Institute for Prospective Technological Studies (IPTS) (Ulf Kristoffersson/Dolores Ibaretta/Irma Nippert) Genetic Services Development in China (Nanbert Zhong) 11:00am 11:15am 12:30pm 1:30pm 3:00pm Coffee New Networking Projects (continued) Networking in Eastern Asia (Carmencita Padilla) Partnership for Perinatal Health Networks (PPHN) (Chris Howson) End of meeting Lunch and departure Steering Committee Meeting Close of meeting Tea and departure Contact Telephone Numbers Alastair Kent +44 (0) Peter Nippert

6 Delegate List Prof. Dr. Irmgard Nippert Partner 1 University of Münster Prof. Dr. Ulf Kristofferson Partner 2 University Hospital, Department of Clinical Genetics Prof. Dr. Jörg Schmidtke Partner 3 Medizinische Hochschule Hannover, Institute for Human Genetics Alastair Kent Partner 4 Genetic Interest Group Prof. Arnold Christianson Partner 5 University of the Witwatersrand, Division of Human Genetics Dr. Cristina Barreiro Partner 7 Genetics Service, Hospital de Pediatría SAMIC Prof. Dr. Ron Zimmern Advisor 1 Public Health Genetics Unit, Strangeways Research Laboratory Prof. Dr. Victor Penchaszadeh Advisor 2 Pan American Health Organisation Dr. Hilary Harris Advisor 4 Dr. Christopher Howson External Evaluator The March of Dimes Birth Defects Foundation, National Office Dr. Stephen Lam Observer Department of Health, Clinical Genetic Service Centre Dr. Nanbert Zhong Observer Peking University Centre of Medical Genetics Dr. Camencita Padilla Observer Institute of Human Genetics, University of the Philippines Manila Dr. Dolores Ibarreta New project partner IPTS Joint Research Centre, European Commission Celine Lewis Assistant partner 4 Genetic Interest Group Luis Robles Trevino Assistant partner 1 University of Münster Karina Bertmaring Assistant partner 1 University of Münster Maria Paz Bidondo Professor Draga Toncheva Ros Hastings Dr Dhavendra Kumar Guest of Cristina Barriero Bulgarian Head of the National Genome Centre Consultant Clinical Geneticist (Genomic Medicine) Hospital de Pediatría SAMIC Medical University of Sofia Institute of Medical Genetics 6

7 Andrew Stevens Hotel Details Macdonald Randolph Hotel Beaumont Street Oxford Oxfordshire OX1 2LN Tel: Fax: Web: A more detailed map can be found via the link below: , &spn= , &z=15 7

8 The Macdonald Randolph Hotel is located in the heart of Oxford, 10 miles from the M40, Junction 9 Directions From M40 J8 Take M40 to J8 signposted to Oxford and Cheltenham. This is the A40. Follow road for about 5 miles, then through a set of traffic lights to the ring road roundabout. Take the right exit to Kidlington and North Oxford. Next roundabout take left exit to Summertown, you are now on Banbury Road. Follow road through Summertown and go through main set of traffic lights to the end of Banbury Road. Follow road to the traffic lights at the end of St Giles. The Randolph is on the corner. Parking Onsite - charges apply By Rail From Oxford Station 1/4 mile By Air Oxford Airport 6.8 miles Heathrow 40 miles Gatwick 75 miles

9 Guest Accommodation Name of Guest Arrival Date Departure Date Prof. Dr. Irmgard Nippert 21 st May 23 rd May Prof. Dr. Ulf Kristofferson 21 st May 23 rd May Prof. Dr. Jörg Schmidtke 21 st May 24 th May Alastair Kent 21 st May 23 rd May Prof. Arnold L. Christianson 21 st May 24 th May Dr. Cristina Barreiro 21 st May 24 th May Prof. Dr. Ron Zimmern 21 st May 23 rd May Prof. Dr. Victor Penchaszadeh 21 st May 23 rd May Dr. Hilary Harris 21 st May 23 rd May Dr. Christopher Howson 21 st May 23 rd May Dr. Stephen Lam 21 st May 24 th May Dr. Nanbert Zhong 21 st May 24 th May Dr. Camencita Padilla 21 st May 24 th May Dr. Dolores Ibarrera 21 st May 23 rd May Luis Robles Trevino 21 st May 23 rd May Karina Bertmaring 21 st May 23 rd May Dr Draga Toncheva 21 st May 23 rd May Maria Paz Bidondo 21 st May 24 th May 9

10 Venue Details Chutneys Indian Brasserie 36 St. Michaels Street Oxford Oxfordshire OX1 2EB Tel: Web: A detailed map can be found via the link below: Oxford Town Hall St Aldate's Oxford Oxfordshire OX1 1BX Tel: Fax: Web: A detailed map can be found via the link below: Headington Hill Hall The Music Room Headington Hill Oxford Oxfordshire OX3 0BP A detailed map can be found via the link below: NB: For those traveling to the meeting by car a map of car parks can be found on page 12 10

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12 Parking in Oxford Maps are courtesy of