HVP Country Nodes - towards a definition

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Just presented Helen Robinson and Timothy Smit A Suggested Model for HVP Country Nodes

description

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.

Transcript of HVP Country Nodes - towards a definition

Page 1: HVP Country Nodes - towards a definition

Just presented

Helen Robinson and Timothy Smith

A Suggested Model for HVP Country Nodes

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HVP Country and Regional Nodes

Towards a DefinitionOperational Management

Strategic ManagementNormative Management

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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

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Modified Panel

• Zilfalil Al Alwi Malaysia

• Andreas Hadjisavvas Cyprus

• Ming Qi China

• Raj Ramesar South Africa

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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?

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Getting Ready

Current status?

Putting pieces together

Moving forward

Fully Functional

Data collection and sharingKey ResourcesELSI

Nature of Genetic ServicesPublic Education

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Getting Ready

Current status?

Putting pieces together

Moving forward

Fully Functional

Data collection and sharingKey ResourcesELSI

Nature of Genetic ServicesPublic Education

Page 8: HVP Country Nodes - towards a definition

Getting Ready

Current status?

Putting pieces together

Moving forward

Fully Functional

Data collection and sharingKey ResourcesELSI

Nature of Genetic ServicesPublic Education

Page 9: HVP Country Nodes - towards a definition

Getting Ready

Current status?

Putting pieces together

Moving forward

Fully Functional

Data collection and sharingKey ResourcesELSI

Nature of Genetic ServicesPublic Education

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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)

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Currently

• A range of genetic tests (on the Dept of National Health website

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About UsWho Are We?Who's Who In The NHLSDivisionsLaboratoriesRegionsContact UsVacanciesShare on favoritesShare on facebookShare on twitterLocate A Laboratory

Hide MapThe following laboratories are available in the Western Cape province.Click here to view all laboratories in the Coastal region.

De Aar

Manager: Mrs. Igme Igme Strauss

Telephone: 0536310669

E-mail: [email protected]: Visser Street

De AarDe AarWestern Cape

Show Lab on MapGeorge

Manager: Mrs. Sheena Stoneley

Telephone: 0448742022

Cellular: 0829073347E-mail: [email protected]: Davidson Road

GeorgeGeorgeWestern Cape

Show Lab on MapGeorge

Manager: Mrs. Helena Pienaar Koen

Telephone: 0448742022

E-mail: [email protected]: Davidson Road

GeorgeGeorgeWestern Cape

Show Lab on MapGF Jooste

Manager: Mr. Anthony Henry Williams

Telephone: 0216922633

E-mail: [email protected]: Room F2

Duinefontein RoadManenbergWestern Cape

Show Lab on MapGPC - Chemical Pathology

Manager: Mrs. Sophia Catharina Lloyd

Telephone: 0214179328

E-mail: [email protected]: Portswood Road

GreenpointCape TownWestern Cape

Show Lab on MapGPC - Haematology

Manager: Mr. Mogamad Abdul Wahaab Davids

Telephone: 0214179338

Address: Portswood RoadGreenpointCape TownWestern Cape

Show Lab on MapGPC - Laboratory Support Service

Manager: Mrs. Nomgcobo Tabita Tabita Makula

Telephone: 0219384169

Address: Portswood RoadGreenpointCape TownWestern Cape

Show Lab on MapGPC - Media/Glassware

Manager: Mrs. Elzane Cronje

Telephone: 0214179350

Cellular: 0845042033E-mail: [email protected]: Portswood Road

GreenpointCape TownWestern Cape

Show Lab on MapGPC - Microbiology

Manager: Mrs. Anthea Collette Ryan

Telephone: 0214179344

Cellular: 0724799485E-mail: [email protected]: Portswood Road

GreenpointCape TownWestern Cape

Show Lab on MapGPC - Public Health

Manager: Mr. Johann Adriaan Steyl

Telephone: 0214179354

Cellular: 0822160586E-mail: [email protected]: Portswood Road

GreenpointCape TownWestern Cape

Show Lab on MapGPC - Tuberculosis

Manager: Mrs. Marlein Elizabeth Bosman

Telephone: 0214179358

E-mail: [email protected]: Portswood Road

GreenpointCape TownWestern Cape

Show Lab on MapGSH - Chemical Pathology

Manager: Ms. Nasima Ahmed Yasien Mohamed

Telephone: 0214044196

E-mail: [email protected]: Anzio Road

ObservatoryCape TownWestern Cape

Show Lab on MapGSH - Cytology

Manager: Ms. Beverley Beverly Bollaert

Telephone: 0214043508

E-mail: [email protected]: Anzio Road

ObservatoryCape TownWestern Cape

Show Lab on MapGSH - Genetics

Manager: Mrs. Theresa Ruppelt

Telephone: 0214044509

Address: Anzio RoadObservatoryCape TownWestern Cape

Show Lab on MapGSH - Haematology

Manager: Mr. Francois Etienne Barton

Telephone: 0214044151

E-mail: [email protected]: Anzio Road

ObservatoryCape TownWestern Cape

Show Lab on MapGSH - Histopathology

Manager: Mrs. Carrol Ann Bilobrk

Telephone: 0214066173

Address: Anzio RoadObservatoryCape TownWestern Cape

Show Lab on MapGSH - Immunology

Manager: Mrs. Erna Kotze

Telephone: 0113866000

Cellular: 0E-mail: [email protected]: Anzio Road

ObservatoryCape TownWestern Cape

Show Lab on MapGSH - Laboratory Support Service

Manager: Mrs. Jolanda Truter

Telephone: 0214044322

Cellular: 0839618050E-mail: [email protected]: Anzio Road

ObservatoryCape TownWestern Cape

Show Lab on MapGSH - Laboratory Support Service

Manager: Ms. Marguerita Hill

Telephone: 0214044133

Cellular: 0785448164E-mail: [email protected]: Anzio Road

ObservatoryCape TownWestern Cape

Show Lab on MapGSH - Management and Admin

• Laboratories

                                                                                                                                                                                                                                                                                                                                                                                                                                                                    

All lab based testing through a single National Health Laboratory Service (NHLS, independent of the academics/health care providers)

Custodians of Genetic test results (as are referring clinicians)

Best placed for providing info for databases (not necessirily interested in maintainingdatabase) Some ‘b

Some ‘boutique’ tests coming out of individual research labs (idea is to get them into the NHLS system)idea is to get them into HLS system)

(

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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)

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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?

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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

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Thank You