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Mapping of WHO Collaborating Centres Related to Public Health Genomics The Initiative on Genomics & Public Health Department of Research Policy & Cooperation The World Health Organization August, 2010

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Page 1: Mapping of WHO Collaborating Centres Related to Public ... · Sensitivity of Key Word Search ... we have carried out a mapping of WHO Collaborating Centres related to public health

Mapping of WHO Collaborating Centres Related to

Public Health Genomics

The Initiative on Genomics & Public Health

Department of Research Policy & Cooperation

The World Health Organization

August, 2010

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Contents

Figures ....................................................................................................................................................2

Aims ........................................................................................................................................................4

Background.............................................................................................................................................4

Methods .................................................................................................................................................5

Step one: Searching the WHO CC database.....................................................................................6

Step two: Consulting the responsible officers for further information...........................................8

Results ....................................................................................................................................................8

Communicable vs Noncommunicable Disease ................................................................................9

Geographic Distribution.................................................................................................................12

Functional Classification ................................................................................................................12

Conclusions...........................................................................................................................................15

Tables

Table 1. Sensitivity of Key Word Search. ................................................................................................7

Table 2. Disease focus of Collaborating Centres in noncommunicable diseases.................................10

Table 3. Disease focus of Collaborating Centres in communicable diseases .......................................11

Table 4. Functional classification of identified Collaborating Centres .................................................16

Figures

Figure 1. Overview of Mapping Process.................................................................................................6

Figure 2. Geographical Distribution of Public Health Genomics Collaborating Centres ......................13

Figure 3. Country and Regional Distributions ofPublic Health Genomics Collaborating Centres. .......14

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Annex

Annex 1 and Annex 2 can be found in attached PDFs. Annex 1 lists the subject terms included in the

database search of Collaborating Centres. Annex 2 provide full reports of identified Collaborating

Centres related to public health genomics, including contact details, Terms of Reference and WHO

Responsible Officers.

Contributions:

Dr. Lixian Zhong (intern at The Initiative on Genomics & Public Health, Department of Research Policy &

Cooperation, WHO Headquarter) carried out the mapping of WHO Collaborating Centres and wrote the

report under supervision by Dr. Mikkel Z. Oestergaard (The Initiative on Genomics & Public Health,

Department of Research Policy & Cooperation). Robert Terry (The Initiative on Genomics & Public

Health, Department of Research Policy & Cooperation) provided feedback to a draft of the report.

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Aims: The WHO Department of Research Policy & Cooperation established the WHO Initiative on Genomics &

Public Health in April 2010. The Initiative builds on the WHO brainstorming meeting "Genomics & Public

Health: What Role Should WHO be Playing?", which took place in the WHO Headquarters, 8th-9th

September 2009. As part of the Initiative, we have carried out a mapping of WHO Collaborating Centres

related to public health genomics. The results of the mapping will be shared across the Organization and

on the WHO Genomics Resource Centre website. Within the Initiative we expect to draw on the

identified Collaborating Centres in support of our agenda.

Background:

The concept of public health genomics was first conceived in the 1990's, and refers to the responsible

and effective translation of genome-based knowledge and technologies for the benefit of population

health1

. In this context, we define genomics broadly as the study and application

of information and technologies based on genetic sequences, molecular biology or cell biology. As

such, genomics refers to information and applications from genetic sequences and all down-stream

molecular- and cellular-based sciences and technologies.

The premise of the WHO Initiative on Genomics & Public Health is that genomics is a cross-disciplinary

field within public health and as such based in the wider context of the Organization's broader agenda.

The Initiative aims to be a WHO-wide Initiative and to work across communicable and non-

1 Alison Stewart, Philippa Brice, Hilary Burton, Paul Pharoah, Simon Sanderson, Ron Zimmern. Genetics, Health

Care and Public Policy: An Introduction to Public Health Genetics. Cambridge University Press (2007).

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communicable diseases. The Initiative seeks to identify tangible genomics-based solutions that can

improve public health practice in developing countries, and to increase WHO and Member States

capacity in public health genomics. In this agenda, one initial step is to map the WHO Collaborating

Centres that work in the area of genomics. The WHO Collaborating Centres are institutions that show a

capacity to fulfil a function or functions related to WHO’s programmes or have high scientific and

technical standing with international recognition. Together they form an international collaborative

network that carry out activities in support of WHO’s programmes at all levels. There are currently over

800 WHO Collaborating Centres in over 80 Member States. More information on WHO Collaborating

Centres can be obtained at the WHO website http://www.who.int/collaboratingcentres/en/.

Methods:

The mapping of WHO Collaborating Centres (CC) working within the area of public health genomics

involved two steps. Firstly, we searched for relevant CCs within the WHO CC database, which is the

official source of information on WHO Collaborating Centres. Secondly, we consulted responsible WHO

officers of shortlisted CCs for further information on CCs. Our mapping focused on the current work of

the CCs as defined by the Terms of Reference, and we only included active CC. An overview of the

mapping process is summarized in Figure 1.

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Figure 1. Overview of Mapping Process

Step one: Searching the WHO CC database

The WHO CC database is open to the public and is accessible through the internet

(http://apps.who.int/whocc/). For each WHO CC entry, it includes: title of the WHO CC; name of the

exact subdivision of the institution that has been designated, and its address, phone and email; name of

the head or director of the WHO CC (who may or may not be the same that the director of the entire

institution); date of original designation, date of last redesignation (if any); date of expiry of current

designation; who initiated the proposal for designation of that WHO CC (either headquarters or one of

the regional offices); name of the responsible officer; name of the counterpart; and terms of reference

of the WHO CC.

The WHO CC database offers convenient features for database management, including functions of

Search, Reports and Portal. In this mapping we primarily used the Search function to identify relevant

WHO CCs. Early exploratory searches in the database showed small sensitivity in data base searches, and

we therefore opted for a broad search strategy to increase sensitivity, although with resulting lower

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specificity. The database has different categories for searching the database, which include: city,

country, director/head, expiry date, designation date, initiator, institution name, OWER, reference no.,

region, responsible officer, status, subject, technical counterpart, terms of reference, title, types of

activity. For our purpose, we searched in the categories of "institution name", "terms of reference" and

"title" for key words "genetics", "genomics", "noncommunicable", "birth defects", "family" (and

"families"), "mendelian" and "congenital". In addition, we also searched "subjects" for CCs that may be

related to public health genomics. The WHO CC database includes 77 subject categories. We included

the 40 subjects that could potentially be related to public health genomics. The subjects included in our

search are listed in supplementary Annex 1.

Table 1. Sensitivity of Key Word Search to Identify Public Health Related CCs. The sensitivity of each key word is

obtained by dividing the number of positive hits with the total number of CCs that came out of each key word

search.

Key Words No. of Search Results No. of Positive Hits Success Rate

Genetic/Genetics 33 27 82%

Genomic/Genomics 8 8 100%

Noncommunicable 13 0 0%

Birth Defects 2 2 100%

Family/Families 53 2 4%

Mendelian 0 0 N/A

Congenital 7 0 0%

In total, this preliminary search gave us 479 WHO Collaboration Centres. We went through the complete

list of the 479 Collaborating Centres by looking at the "terms of reference", "subjects", "types of

activity" and "WHO organization wide expected result" and decided if it is related to genomics. By doing

this, we were able to eliminate a lot of the hits and narrowed our list to 43 WHO Collaborating Centres.

35 responsible officers were in charge of these WHO CCs. More specifically, the search of the 40 subjects

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gave us 449 Collaborating Centres (some of them overlap with the result of key words search). Of these

CCs, 38 of them were related to public health genomics, which gave us a success rate of 8.5%. Using our

key word search, we identified 106 CCs, of which 33 were related to public health genomics, that is, a

sensitivity rate 31%. The sensitivity of each key word search is shown in Table 1.

Step two: Consulting the responsible officers for further information

We asked three question to each of the Responsible Officers of the identified CCs: (A) if you know of

any other Collaborating Centres than the ones listed that might be relevant for our mapping; (B) if the

Terms of Reference for each of the Collaborating Centres (as described in the database) are adequately

describing the current activities and expertise of each Centre in its function as a WHO Collaborating

Centre; and (C) if you know of any persons or groups within WHO working in genetics, molecular

sciences or in areas related to the translation of research or technologies in these areas into clinical and

public health practice. The response rate from the Responsible Officers was 40%. From their answers,

we were able to eliminate and add a few more collaboration centres to our list, which then reached 46

in number. We also compared our list to the list of the WHO Collaborating Centres that the WHO Human

Genetics Programme has been using in their work (kindly shared by Dr. Victor Boulyjenkov and Dr.

Shanthi Mendis from the WHO Human Genetics Programme) and added 2 more Collaborating Centres to

our list (Reference numbers: CYP-1 and UNK-199). In total, we identified 48 Collaborating Centres in our

mapping.

Results:

To identify WHO Collaborating Centres relevant to public health genomics, we searched the WHO CC

database and consulted the Responsible Officers of shortlisted CCs. In total, we identified 48 relevant

CCs. Below we summarize results by outlining geographical distribution, functions and disease focus of

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identified CCs. Annex 2 provide full reports of identified Collaborating Centres related to public health

genomics, including contact details, Terms of Reference and WHO Responsible Officers.

Communicable vs Noncommunicable Disease

We first categorized identified centres according to whether centres have a communicable or

noncommunicable disease focus. Public health genomics related Collaborating Centres in the

noncommunicable disease category usually work with human genomics or hereditary diseases. If a

centre deals with pathogen (virus, bacteria, parasites etc), vector (such as mosquito) genomics as well as

genetically engineered vaccine then we categorized it in the communicable disease category. None of

the Collaborating Centres focused on the interaction of host, pathogen and vector genomics (for

example in form of variation in host susceptibility to infectious diseases). 25 of the CCs have focus on

communicable diseases and 25 of the CCs focus on noncommunicable diseases. Two of the CC are

classified as both communicable and noncommunicable diseases: Australia Department of Health &

Ageing (AUS-42) provides consultancy in the field of quality assurance of both vaccines (for

communicable diseases) & other biologicals (can be used for diagnosis and treatment of both

communicable and noncommunicable diseases). University of Zürich (SWI-58) is focused on biomedical

and health ethics (both communicable and noncommunicable diseases). For both the noncommunicable

and communicable diseases categories, we summarized the disease focus based on the Title and Terms

of Reference of each CC, see Table 2 and Table 3.

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Table 2 Disease Focus of Public Health Genomics related Collaborating Centres in Noncommunicable Diseases

Category.

Reference

Number Institution Name Disease Focus

AUS-42 Therapeutic Goods Administration Laboratories (TGAL) vaccines and biological

BRA-58 Hospital de Clinicas de Porto Alegre metabolic disorders, SCD, cancer, birth defects and other

genetic disorders

CHN-64 Institute of Basic Medical Sciences, Chinese Academy of Medical Sciences genetic disorders

CHN-71 Central South University drug addiction and some major mental disorders

CHN-87 Nanjing Medical University deafness

CYP-1 Cyprus Thalassaemia Centre for Community Control of Thalassaemia,

Ministry of Health thalassaemia and other haemoglobinopathies

DEN-50 H.S. Bispebjerg Hospital deafness

GRE-21 General Hospital thalassemia and SCD

IND-71 All India Institute of Medical Sciences (AIIMS) genetic disorders

ITA-36 Universita degli Studi di Cagliari haemoglobin disorders, diabetes, multiple sclerosis,

celiac disease and other genetic disorders

ITA-64 University of Pisa endrocrine disorders

ITA-88 International Centre on Birth Defects birth defects

JPN-62 Tokyo Medical & Dental University mental disorders

RUS-105 Ufa Research Institute of Occupational Health and Human Ecology occupational diseases

RUS-91 National Research Centre for Medical Genetics, Russian Academy of Medical

Sciences cystic fibrosis

SPA-20 Hospital Universitario San Carlos mental disorders

SVN-6 University of Medical Centre Ljubljana reproductive health

SWI-44 Université de Lausanne CVD

SWI-58 University of Zürich biomedical and public health ethics

UNK-132 Department of Health Informatics & Multiprofessional Education (CHIME) genetic disorders

UNK-135 University of Newcastle-upon-Tyne Medical School diabetes

UNK-175 UCL Institute of Neurology neurological disorders & particularly epilepsy

UNK-199 University of Ulster congenital anomalies

UNK-205 University of Manchester chronic noncommunicable diseases, mental and

neurological disorders, violence, injuries and disabilities

USA-208 University of Pittsburgh diabetes

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Table 3. Disease Focus of Public Health Genomics related Collaborating Centres in Communicable Diseases

Category.

Reference

Number Institution Name Disease Focus

AUS-40 Murdoch University parasitic diseases other than those specifically mentioned

and zoonoses

AUS-91 Victorian Infectious Diseases Reference Laboratory (VIDRL) influenza

AUS-96 Australian National University biomedical and public health ethics

CAN-58 University of Toronto biomedical and public health ethics

CHN-6 Chinese Center for Diseases Control and Prevention (China CDC) malaria

CHN-76 Second Military Medical University malaria

COL-12 Fundacion Centro Internacional de Entrenamiento e Investigaciones Medicas

(CIDEIM) leishmaniasis and trypanosomiasis

FIN-24 Finland (THL) poliomyelitis

FRA-79 France (Institute Pasteur) poliomyelitis

IND-90 National Institute of Mental Health and Neurosciences (NIMHANS) rabies

IND-91 Indian Council of Medical Research (ICMR) zoonoses

ITA-49 Istituto Superiore di Sanita poliomyelitis

JPN-64 National Institute of Infectious Diseases influenza

KUW-4 University of Kuwait HIV/AIDS

LUX-3 Laboratoire National de Santé (LNS) measles

POL-18 National Tuberculosis & Lung Diseases Research Institute TB

SPA-30 Instituto de Salud Carlos III HIV/AIDS

UNK-103 National Institute for Medical Research, Medical Research Council influenza

UNK-126 Natural History Museum Schistosomiasis

UNK-144 United Kingdom (NIBSC) Poliomyelitis

USA-118 National Centers for Infectious Diseases, Centers for Disease Control &

Prevention (CDC) influenza

USA-126 National Center for Infectious Diseases (NCID), Center for Disease Control

and Prevention (CDC)

smallpox communicable diseases other than those

specifically mentioned

USA-147 St. Jude Children's Research Hospital, University of Tennessee influenza

AUS-42 Therapeutic Goods Administration Laboratories (TGAL) vaccines and biologicals

SWI-58 University of Zürich biomedical and public health ethics

¨

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Geographic Distribution:

Figures 2 and 3 illustrate the geographical distribution of the identified Collaborating Centres (see next

pages). These 48 Collaborating Centres are from 22 countries . Africa is the only WHO region without

any public health genomics related Collaborating Centres.

Functional Classification:

Based on the terms of reference, types of activity and WHO organization wide expected result, we

classified each Collaborating Centres into several different functions related to public health genomics:

bioethics, policy, training and education, prevention, diagnosis, treatment, surveillance and basic

research. Of these 48 Collaborating Centres, 5 (10%) are related to bioethics, 25 (50%) related to policy

making, 43 (90%) related to training and education, 32 (67%) related to disease prevention, 27 (56%)

related to diagnosis, 21 (44%) related on treatment, 29 (60%) related to surveillance and 39 (81%)

related on basic research. For more specific details, please refer to Table 4.

We also specifically looked to see if the public health genomics related Collaborating Centres have focus

on developing countries and/or birth defects. 16 (36%) Collaborating Centres are located in developing

countries and work on domestic or other developing countries’ public health genomics related issues, or

are located in developed countries but focus on developing countries. 13 (30%) of the Collaborating

Centres are related to birth defects. This information is also summarized in Table 4.

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Figure 2. Geographical Distribution of Communicable and Noncommunicable Collaborating Centres

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Figure 3. Country (A) and Regional (B) Distributions of Public Health Genomics Collaborating Centres.

(A) Country distribution of Public Health Genomics Collaborating Centres. The number of Collaborating Centres is

indicated on top of each bar.

(B) Regional distribution of Public Health CCs versus all Active CCs. The blue bars are the percentage of Public

Health Genomics Collaborating Centres in each WHO region(regional Public Health Genomics CCs/total Public

Health Genomics CCs); the red bars are the percentage of active Collaborating Centres in each region (regional

active CCs/all active CCs, as of Aug. 14th

, 2010) AFRO: Africa; AMRO: Americas; EMRO: Eastern Mediterranean;

EURO: Europe ; SEARO: South-East Asia ; WPRO: Western pacific.

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Conclusions:

Of the approximately 800 WHO Collaborating Centres, 48 Centres are relevant to public health

genomics. These Centres are located across 22 countries and all WHO regions, except for the WHO

Africa region. Half of the Centres are focused on communicable diseases, and the other half on

noncommunicable diseases. Almost a third (n = 13) of the 48 Centres are focused on birth defects. The

48 Centres together form a valuable resource for WHO and Member States across several functions in

public health genomics, including: basic research, bioethics, education, policy, and disease surveillance,

prevention, diagnosis and treatment. The WHO Executive Board urged in January 2000 WHO

Collaborating Centres to develop working relations with other centres and national institutions

recognized by WHO. Such multi-lateral networks have not yet been formed within the area of public

health genomics, but could potentially increase the use of the Centres as sources of information,

services and expertise, and could strengthen national capacity for training, research and collaboration.

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Table 4. Functional classification of Collaborating Centres related to Public Health Genomics

Ref.

Number Institution Country

Noncommunicable

or Communicable Bioethics Policy Training Prevention Diagnostic Treatment Surveillance

Basic

Research

Developing

Country

Focus

Birth

Defects

Focus

AUS-40 Murdoch

University AUSTRALIA communicable no yes yes no no no yes yes no no

AUS-42

Therapeutic

Goods

Administration

Laboratories

(TGAL)

AUSTRALIA N/C no yes yes yes yes yes no no no no

AUS-91

Victorian

Infectious

Diseases

Reference

Laboratory

(VIDRL)

AUSTRALIA communicable no no no yes no no yes yes no no

AUS-96

Australian

National

University

AUSTRALIA communicable yes no yes no no no no yes yes no

BRA-58

Hospital de

Clinicas de Porto

Alegre

BRAZIL noncommunicable no yes yes yes yes yes yes no yes yes

CAN-58 University of

Toronto CANADA communicable yes no yes no no no no no no no

CHN-6

Chinese Center

for Diseases

Control and

Prevention

(China CDC)

CHINA communicable no yes yes yes yes yes yes yes yes no

CHN-64

Institute of Basic

Medical

Sciences,

Chinese

Academy of

Medical Sciences

CHINA noncommunicable no no yes yes no no no yes yes yes

CHN-71 Central South

University CHINA noncommunicable no yes yes no no no no yes yes no

CHN-76

Second Military

Medical

University

CHINA communicable no no yes yes no no no yes yes no

CHN-87 Nanjing Medical

University CHINA noncommunicable no yes yes yes yes yes no yes yes yes

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Ref.

Number Institution Country

Noncommunicable

or Communicable Bioethics Policy Training Prevention Diagnostic Treatment Surveillance

Basic

Research

Developing

Country

Focus

Birth

Defects

Focus

COL-12

Fundacion

Centro

Internacional de

Entrenamiento e

Investigaciones

M??dicas

(CIDEIM)

COLOMBIA communicable no yes yes no yes yes yes yes yes no

CYP-1

Cyprus

Thalassaemia

Centre for

Community

Control of

Thalassaemia,

Ministry of

Health

CYPRUS noncommunicable no yes yes yes yes yes yes no no yes

DEN-50 H.S. Bispebjerg

Hospital DENMARK noncommunicable no yes yes yes no yes no no yes no

FIN-24 Finland (THL) FINLAND communicable no yes yes no no no yes yes no no

FRA-79 France (Institute

Pasteur) FRANCE communicable no no yes yes no no yes yes no no

GRE-21 General Hospital GREECE noncommunicable no yes yes no yes yes yes yes yes yes

IND-71

All India Institute

of Medical

Sciences

(AIIMS)

INDIA noncommunicable no no yes yes yes no no yes no yes

IND-90

National Institute

of Mental Health

and

Neurosciences

(NIMHANS)

INDIA communicable no no yes yes yes yes yes yes no no

IND-91

Indian Council of

Medical

Research

(ICMR)

INDIA communicable no no yes yes yes no yes yes yes no

ITA-36 Universita degli

Studi di Cagliari ITALY noncommunicable no yes yes yes yes yes yes yes no yes

ITA-49 Istituto Superiore

di Sanita ITALY communicable no no yes yes yes no yes yes no no

ITA-64 University of

Pisa ITALY noncommunicable no yes yes yes yes yes no yes no no

ITA-88

International

Centre on Birth

Defects

ITALY noncommunicable no no yes yes no no yes yes no yes

JPN-62

Tokyo Medical

& Dental

University

JAPAN noncommunicable no no yes no yes yes no yes yes no

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Ref.

Number Institution Country

Noncommunicable

or Communicable Bioethics Policy Training Prevention Diagnostic Treatment Surveillance

Basic

Research

Developing

Country

Focus

Birth

Defects

Focus

JPN-64

National Institute

of Infectious

Diseases

JAPAN communicable no yes yes yes yes no yes yes no no

KUW-4 University of

Kuwait KUWAIT communicable no yes yes no yes yes no yes yes no

LUX-3

Laboratoire

National de Santé

(LNS)

LUXEMBOURG communicable no no yes yes yes no yes yes yes no

POL-18

National

Tuberculosis &

Lung Diseases

Research

Institute

POLAND communicable no no yes no no yes yes no yes no

RUS-

105

Ufa Research

Institute of

Occupational

Health and

Human Ecology

RUSSIAN

FEDERATION noncommunicable no no no yes no no no yes no no

RUS-91

National

Research Centre

for Medical

Genetics,

Russian

Academy of

Medical Sciences

RUSSIAN

FEDERATION noncommunicable no no no no yes No yes no no yes

SPA-20

Hospital

Universitario San

Carlos

SPAIN noncommunicable no no yes no yes Yes no yes no no

SPA-30 Instituto de Salud

Carlos III SPAIN communicable no yes yes yes no No no yes no no

SVN-6

University of

Medical Centre

Ljubljana

SLOVENIA noncommunicable yes yes yes yes yes Yes no yes no yes

SWI-44 Université de

Lausanne SWITZERLAND noncommunicable no no yes yes no No yes yes yes no

SWI-58 University of

Zürich SWITZERLAND N/C yes no yes no no No no yes yes no

UNK-

103

National Institute

for Medical

Research,

Medical

Research Council

UK communicable no no yes yes yes yes yes yes no no

UNK-

126

Natural History

Museum UK communicable no yes no no no no yes yes no no

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Ref.

Number Institution Country

Noncommunicable

or Communicable Bioethics Policy Training Prevention Diagnostic Treatment Surveillance

Basic

Research

Developing

Country

Focus

Birth

Defects

Focus

UNK-

132

Department of

Health

Informatics &

Multiprofessional

Education

(CHIME)

UK noncommunicable no no yes no no no yes yes yes yes

UNK-

135

University of

Newcastle-upon-

Tyne Medical

School

UK noncommunicable no yes yes yes no no no no yes no

UNK-

144

United Kingdom

(NIBSC) UK communicable no yes yes yes yes no yes yes no no

UNK-

175

UCL Institute of

Neurology UK noncommunicable no no yes yes yes yes yes yes no no

UNK-

199

University of

Ulster UK noncommunicable no yes yes yes yes no yes no no yes

UNK-

205

University of

Manchester UK noncommunicable no yes yes yes no yes no yes no yes

USA-

118

National Centers

for Infectious

Diseases, Centers

for Disease

Control &

Prevention

(CDC)

USA communicable no no yes yes yes yes yes yes no no

USA-

126

National Center

for Infectious

Diseases (NCID),

Center for

Disease Control

and Prevention

(CDC)

USA communicable yes yes no yes yes yes yes yes no no

USA-

147

St. Jude

Children's

Research

Hospital,

University of

Tennessee

USA communicable no yes yes yes yes no yes yes no no

USA-

208

University of

Pittsburgh

USA noncommunicable no no yes no no no yes yes no no