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HVP Country Nodes - towards a definition

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Following the first meeting of the International Confederation of Countries Advisory Council meeting in Beijing last year, it has become evident that the concept of HVP Country Nodes has evolved from …

Following the first meeting of the International Confederation of Countries Advisory Council meeting in Beijing last year, it has become evident that the concept of HVP Country Nodes has evolved from their initial definition as repositories of genetic variation information in single countries. There appears to be a desire amongst Human Variome Project Consortium members that HVP Country Nodes should be seen as a nucleus for activities relating to human genetics within a country. With this view in mind, the Human Variome Project International Coordinating Office has prepared a new model for HVP Country Nodes. This model was presented (see http://www.slideshare.net/variomeproj/a-suggested-model-for-hvp-country-nodes) at the 4th Biennial Meeting of the Human Variome Project Consortium to initiate discussion and debate during this panel session. It is a “straw man” model, meant to be knocked down, dissected and discussed, in the hopes of building a better, more representative model.

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  • 1. Just presentedA Suggested Model for HVP Country NodesHelen Robinson and Timothy Smith
  • 2. HVP Country and Regional Nodes Towards a Definition Operational Management Strategic Management Normative Management
  • 3. Panel• Najib Al Khaja, Centre for Arab Genomic Studies, United Arab Emirates• Zilfalil Al Alwi, Malaysia• Andreas Hadjisavvas, The Cyprus Institiute of Neurology and Genetics, Cyprus• Ming Qi, Centre for Genetic and Genomic Medicine; Zhejiang University School of Medicine, China• Raj Ramesar, Div of Human Genetics, U of Cape Town, South Africa Diversity is strength
  • 4. Modified Panel• Zilfalil Al Alwi Malaysia• Andreas Hadjisavvas Cyprus• Ming Qi China• Raj Ramesar South Africa
  • 5. Format• Brief presentations will encompass their own environment re the development of a node in each of these diverse settings• Followed by an interactive phase with the following objective:To discuss and debate the model presented• Is the model required?• Should it look like the one presented?• What does the presented model lack?
  • 6. Getting Current Putting Moving Fully Ready status? pieces forward Functional togetherDatacollectionand sharingKeyResourcesELSINature ofGeneticServicesPublicEducation
  • 7. Getting Current Putting Moving Fully Ready status? pieces forward Functional togetherDatacollectionand sharingKeyResourcesELSINature ofGeneticServicesPublicEducation
  • 8. Getting Current Putting Moving Fully Ready status? pieces forward Functional togetherDatacollectionand sharingKeyResourcesELSINature ofGeneticServicesPublicEducation
  • 9. Getting Current Putting Moving Fully Ready status? pieces forward Functional togetherDatacollectionand sharingKeyResourcesELSINature ofGeneticServicesPublicEducation
  • 10. South Africa• Historically, genetic testing arbitrarily located in the environment of the 4-5 academic genetic or related departments (Medical Genetics, Chemical Pathology: Inborn Errors of Metabolism) around the country• Federally regularised through the Dept of Health (catalog of genetic tests available)
  • 11. Currently• A range of genetic tests (on the Dept of National Health website
  • 12. All lab based testing through a single National Health Laboratory Service (NHLS, •Laboratoriesindependent of the academics/health care providers)Custodians of Genetic test results (as are referring About UsWho Are We? Whos Who In The NHLS Divisions Laboratorie sclinicians) Regions Contact Us Vacancies Share on favoritesSh are on facebookSh are on twitter Locate A Laboratory Hide Map The following laboratorie s are available in the Western Cape province. Click here to view all laboratorie s in the Coastal region. De Aar Manager: Mrs. Igme Igme Strauss Telephone: 0536310669 ( E-mail: igme.sauss@nhls.ac.zaBest placed for providing info for databases (not necessirily interested in maintaining Address: Visser Street De Aar De Aar Western Cape Show Lab on Map George Manager: Mrs. Sheena Stoneley Telephone: 0448742022 Cellular: 0829073347 E-mail: sheena.stoneley@nhls.ac.za Address: Davidson Roaddatabase) Some ‘b George George Western Cape Show Lab on Map George Manager: Mrs. Helena Pienaar Koen Telephone: 0448742022 E-mail: helena.koen@nhls.ac.za Address: Davidson Road George George Western Cape Show Lab on Map GF Jooste Manager: Mr. Anthony Henry Williams Telephone: 0216922633 E-mail: anthony.williams@nhls.ac.za Address: Room F2 Duinefontein Road Manenberg Western Cape Show Lab on Map GPC - Chemical PathologySome ‘boutique’ tests coming out of individual research labs (idea is to get them into Manager: Mrs. Sophia Catharina Lloyd Telephone: 0214179328 E-mail: sorina.lloyd@nhls.ac.za Address: Portswood Road Greenpoint Cape Town Western Cape Show Lab on Map GPC - Haematology Manager: Mr. Mogamad Abdul Wahaab Davids Telephone: 0214179338the NHLS system)idea is to get them into HLS system) Address: Portswood Road Greenpoint Cape Town Western Cape Show Lab on Map GPC - Laboratory Support Service Manager: Mrs. Nomgcobo Tabita Tabita Makula Telephone: 0219384169 Address: Portswood Road Greenpoint Cape Town Western Cape Show Lab on Map GPC - Media/Glassware Manager: Mrs. Elzane Cronje Telephone: 0214179350 Cellular: 0845042033 E-mail: elzane.cronje@nhls.ac.za Address: Portswood Road Greenpoint Cape Town Western Cape Show Lab on Map GPC - Microbiology Manager: Mrs. Anthea Collette Ryan Telephone: 0214179344 Cellular: 0724799485 E-mail: anthea.ryan@nhls.ac.za Address: Portswood Road Greenpoint Cape Town Western Cape Show Lab on Map GPC - Public Health Manager: Mr. Johann Adriaan Steyl Telephone: 0214179354 Cellular: 0822160586 E-mail: johan.steyl@nhls.ac.za Address: Portswood Road Greenpoint Cape Town Western Cape Show Lab on Map GPC - Tuberculosis Manager: Mrs. Marlein Elizabeth Bosman Telephone: 0214179358 E-mail: marlein.bosman@nhls.ac.za Address: Portswood Road Greenpoint Cape Town Western Cape Show Lab on Map GSH - Chemical Pathology Manager: Ms. Nasima Ahmed Yasien Mohamed Telephone: 0214044196 E-mail: nasima.mohamed@nhls.ac.za Address: Anzio Road Observatory Cape Town Western Cape Show Lab on Map GSH - Cytology Manager: Ms. Beverley Beverly Bollaert Telephone: 0214043508 E-mail: beverley.bollaert@nhls.ac.za Address: Anzio Road Observatory Cape Town Western Cape Show Lab on Map GSH - Genetics Manager: Mrs. Theresa Ruppelt Telephone: 0214044509 Address: Anzio Road Observatory Cape Town Western Cape Show Lab on Map GSH - Haematology Manager: Mr. Francois Etienne Barton Telephone: 0214044151 E-mail: francois.barton@nhls.ac.za Address: Anzio Road Observatory Cape Town Western Cape Show Lab on Map GSH - Histopathology Manager: Mrs. Carrol Ann Bilobrk Telephone: 0214066173 Address: Anzio Road Observatory Cape Town Western Cape Show Lab on Map GSH - Immunology Manager: Mrs. Erna Kotze Telephone: 0113866000 Cellular: 0 E-mail: erna.kotze@nhls.ac.za Address: Anzio Road Observatory Cape Town Western Cape Show Lab on Map GSH - Laboratory Support Service Manager: Mrs. Jolanda Truter Telephone: 0214044322 Cellular: 0839618050 E-mail: yolande.truter@nhls.ac.za Address: Anzio Road Observatory Cape Town Western Cape Show Lab on Map GSH - Laboratory Support Service Manager: Ms. Marguerita Hill Telephone: 0214044133 Cellular: 0785448164 E-mail: margi.hill@nhls.ac.za Address: Anzio Road Observatory Cape Town Western Cape Show Lab on Map GSH - Management and Admin
  • 13. Stakeholders• Southern African Society for Human Genetics• Academic Units/Medical Genetics practitioners/boutique labs• National Health Laboratory Services• Government: Department of Science and Technology/Department of Health• Regionally: African Society for Human Genetics (excellent continental network)
  • 14. ObjectiveTo discuss and debate the model presented• Is the model required?• Should it look like the one presented?• What does the presented model lack?
  • 15. Output• For all the countries that are here• It would be really good value to use this documentation to provide an insight of what is going on• Internationally valuable mapping resource
  • 16. Thank You