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DEVELOPMENT OF NETWORK
OF CANCER FAMILY SYNDROME
REGISTRIES IN EASTERN EUROPE
Project co-ordinator:
Prof. Jan Lubiński
Hereditary Cancer Centre,
Pomeranian Medical University, Szczecin, Poland
EU PROJECT
NETWORK OF CANCER FAMILY SYNDROME
REGISTERS IN EASTERN EUROPE
PROJECT PARTICIPANTS:
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Prof. P. Boesze
Dr. P. Elsakov
Dr. L. Foretova
Prof. J. Gardovskis
Prof. N. Haites
Dr. G. Moeslein
Prof. H. Neumann
Prof. B. Ponder
Prof. H. Sobol
Dr. H. Vasen
Dr. W. Weber
J.-P. Mecklin
(Hungary),
(Lithuania),
(Czech Republic),
(Latvia),
(United Kingdom),
(Germany),
(Germany),
(United Kingdom),
(France),
(Netherlands),
(Switzerland),
(Finnland – subcontractor)
THE SCIENTIFIC OBJECTIVES
OF THE PROJECT INCLUDED:
1. Elaboration of standards for a model cancer family
syndrome (CFS) registries in Eastern Europe
2. Registration of 2000 families with different types of CFS
in populations of East European countries (Czech Republic,
Hungary, Latvia, Lithuania, Poland)
3. Initiation of European collaborative studies with the use
of material collected by East European CFS registries
RESULTS:
Ad 1.
In the initial phase of the project, East European
scientists visited Western centres in United Kingdom,
Germany, France and Netherlands and performed analyses
of existing situation in their countries.
On the basis of these and literature data, all of the
project participants formulated diagnosis and conclusions
concerning development of the model CFS registry in
Eastern Europe and described standards of a model
organisational structure of Hereditary Cancer Centres in
Eastern Europe.
RESULTS:
Country
CFS type
Czech
Breast/ ovarian cancers
Hungary
Latvia
Lithuania
Poland
TOTAL
140
32
2
44
963
1181
HNPCC
54
12
57
13
284
420
Other or undefined CFS
66
22
1
3
1713
1805
260
66
60
60
2960
3406
Total
PARTICULAR ACHIEVEMENTS
 Registration of ~1300 BRCA 1 mutation
carriers
 1,253 mln of 1,45 mln of inhabitants
in West – Pomerania, Poland screened
for CFS
TWÓJ STYL
RESULTS:
Ad 3. Collaborative studies: A. Ongoing:
1. Clinical characteristics of families with FH gene constitutional mutations – Cybulski C.,
Mecklin J.P., Lubinski J.
2. Classification of hereditary cancers based on changes at protein level –
Europroteome – Berlin – Lubinski J.
3. Modifying genes in patients with BRCA 1 constitutional mutations – Hamman U.,
Goldgar D., Scott R.J., Gronwald J., Lubinski J.
4. Nature and frequency of MSH 6 gene mutations in Latvia – Irmejs A., Gardovskis J.,
Kurzawski G., Suchy J., Lubinski J.
5. Family ascertainment and sample collection for identification of additional breast
cancer susceptibility genes in the BRCAX study – Lubinski J., Goldgar D.
6. Average risk of breast and ovarian cancer associated with mutations in BRCA1 and
BRCA2 detected in case series unselected for family history - Pharoah P., Ponder B.,
Narod S., Gronwald J., Lubinski J.
RESULTS:
Ad 3. Collaborative studies: A. Ongoing:
7. Nuclear pedigree criteria of suspected HNPCC – Kladny J., Moeslein G., Lubinski J.
8. Founder mutations in the BRCA 1 gene in west Belarusian breast-ovarian cancer
families – Oszurek O., Lubinski J.
9. Germline MSH 2 and MLH 1 mutational spectrum in HNPCC families from Poland and
Baltic states – Kurzawski G., Elsakov P., Gardovskis J., Irmejs A., Moeslein G.,
Lubinski J.
10. Concerted Action Polyp Prevention 2. A randomised controlled trial of colorectal
polyp and cancer prevention using aspirin in carriers of HNPCC – Lubinski J., Elsakov
P., Burn J.
11. Stem Cell Therapeutics – Excellence Centre - Dembinska-Kiec A., Lubinski J.
12. Centre of Excellence in Molecular Bio-Medicine – Witt M., Lubinski J.
13. Excellence Centre for Hereditary Cancers (Network of Excellence) – Lubinski J.,
Elsakov P., Foretova L., Gardovskis J., Haites N., Ponder B., Moeslein G., Neumann
H., Sobol H., Mecklin J.-P., Vasen H., Weber W.
RESULTS:
Ad 3. Collaborative studies: B. Proposed:
1. Letters of Expression of Interest for 6th Framework Programme
(European Commission):
- Identification of Men with a genetic predisposition to prostate cancer and their treatment –
Eeles R.
- Assessment of the therapeutic response in breast cancer - Sobol H.
- Clinical management of familial breast cancer (Network of Excellence) – Eccles D.
- Prevention of hereditary endometrial cancer – Vasen H.
- Colorectal cancer genetics: insight into cause and prevention (Network of Excellence) Burn J.
- Public health systems in combating hereditary cancers (Network of Excellence) – Lubinski
J.
RESULTS:
Ad 3. Collaborative studies: B. Proposed:
2. Modifying genes in patients with mutations within HNPCC genes –
Scott R.J., Irmejs A., Kurzawski G., Marlicz K., Lubinski J.
3. Incidence of BRCA 2 constitutional mutations in families with
aggregation of stomach and ovarian cancers – Jakubowska A.,
Starzynska T., Lubinski J., Caldas C.
4. Clinical characteristics of familial pancreatic cancers – Nej K.,
Starzynska T., Marlicz K., Lubinski J., Moeslein G.
WELCOME TO DEVELOP
COLLABORATIVE STUDIES
WITH PARTICIPATION
OF EAST EUROPEAN
REGISTRIES
EUROPEAN REGISTRY
More information:
 www.genetyka.com
 e-mail: [email protected]
 phone: +48-91-466-15-42
(Karolina Zięba)
fax:
+48-91-466-15-33