Congreso
Autoría
Lopez F
;
Kravochuck S,
;
Vaccaro C
;
Rossi B
;
Sarroca C
;
Padron J
;
Alfonso R
;
Ortega D
;
Nishizawa J
;
Bordon A
;
Carrion J
;
Spirandeli E
;
ANTELO, MARINA
;
Santos E
;
Aguiar S
;
Palmeiro B
;
Prolla P
;
Church J
Fecha
2013
Editorial y Lugar de Edición
Springer
ISSN
1389-9600
Resumen
Información suministrada por el agente en
SIGEVA
Purpose: Hereditary colorectal cancer affects all ethnicities and all countries. Well established registries lead in the management of these syndromes in North America, Europe and Australasia, where resources are relatively abundant. In Latin America, registries are a recent development and resources are lacking. We conducted this survey to define the state of hereditary colorectal cancer registries in countries affiliated with the CGA. Methods: A survey was sent electronically to members of th...
Purpose: Hereditary colorectal cancer affects all ethnicities and all countries. Well established registries lead in the management of these syndromes in North America, Europe and Australasia, where resources are relatively abundant. In Latin America, registries are a recent development and resources are lacking. We conducted this survey to define the state of hereditary colorectal cancer registries in countries affiliated with the CGA. Methods: A survey was sent electronically to members of the Latin American branch of the Collaborative Group of the Americas (CGA). It asked questions about the structure and function of registries for hereditary colorectal cancer. Results: Fourteen surveys were returned from 10 countries; 3 from Argentina, 3 from Brazil and one each from Chile, Peru, Colombia, Bolivia, Ecuador, Uruguay, Venezuela and Paraguay. 6 registries are affiliated with a University, and these 6 have funding. 4 registries were established before 2000, and 9 after. 8 different database programs are being used among registries. Tumor testing by immunohistochemistry is done in 9 registries, MSI in 7 registries, BRAF mutations in 45 and methylation in 3. Testing for germline mutations is offered by 8 registries for FAP, 7 for Lynch syndrome, 5 for MYH-associated polyposis, 4 for PTEN and 2 for Peutz-Jegher?s and Juvenile polyposis. The total families registered/managed by the collective Latin American Group are as follows: FAP 235/170, Attenuated FAP 84/73, Desmoid disease 46/43, MAP 24/13, serrated polyposis 7/1, Peutz Jehgers syndrome 34/23, Juvenile polyposis 9/5, PTEN Tumor Hamartoma syndrome 7/6, Lynch syndrome 286/256, HNPCC excluding Lynch 445/201, Type X 58/45, Familial Colorectal Cancer 1113/643. The total patients registered/managed are: FAP 354/325, Attenuated FAP 208/159, Desmoid disease 50/42, MAP 8/8, serrated polyposis 1/1, Peutz Jehgers syndrome 32/25, Juvenile polyposis 5/5, PTEN Tumor Hamartoma syndrome 1/1, Lynch syndrome 393/357, HNPCC excluding Lynch 600/579, Type X 108/54, Familial Colorectal Cancer 2082/1815. The data show that while some syndromes are well covered (FAP, Lynch), others are barely registered at all (PTEN syndromes, MYH polyposis, serrated polyposis, juvenile polyposis) Conclusion: Registries for hereditary colorectal cancer exist in most countries in Latin America, reflecting strong interest and dedication by the leading doctors involved. There are many patients and families being served, but there is considerable difference in resources, size and methodology between registries. The Latin American section of the CGA must work to achieve more uniformity of methods, sharing of resources and expansion into under-served areas of their continent.
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Palabras Clave
REGISTRIESCANCERCOLORECTALLATINAMERICA