Hereditary cancer registries improve the care of patients with a genetic predisposition to cancer:contributions from the Dutch Lynch syndrome registry

The Dutch Hereditary Cancer Registry was established in 1985 with the support of the Ministry of Health (VWS). The aims of the registry are: (1) to promote the identification of families with hereditary cancer, (2) to encourage the participation in surveillance programs of individuals at high risk, (3) to ensure the continuity of lifelong surveillance examinations, and (4) to promote research, in particular the improvement of surveillance protocols. During its early days the registry provided assistance with family investigations and the collection of medical data, and recommended surveillance... Mehr ...

Verfasser: Vasen, Hans F A
Velthuizen, Mary E
Kleibeuker, Jan H
Menko, Fred H
Nagengast, Fokke M
Cats, Annemieke
van der Meulen-de Jong, Andrea E
Breuning, Martijn H
Roukema, Anne J
van Leeuwen-Cornelisse, Inge
de Vos Tot Nederveen Cappel, Wouter H
Wijnen, Juul T
Dokumenttyp: Artikel
Erscheinungsdatum: 2016
Reihe/Periodikum: Vasen , H F A , Velthuizen , M E , Kleibeuker , J H , Menko , F H , Nagengast , F M , Cats , A , van der Meulen-de Jong , A E , Breuning , M H , Roukema , A J , van Leeuwen-Cornelisse , I , de Vos Tot Nederveen Cappel , W H & Wijnen , J T 2016 , ' Hereditary cancer registries improve the care of patients with a genetic predisposition to cancer : contributions from the Dutch Lynch syndrome registry ' , Familial Cancer , vol. 15 , no. 3 , pp. 429-435 . https://doi.org/10.1007/s10689-016-9897-1
Schlagwörter: Hereditary cancer / Registry / Follow-up system / Identification / Lynch syndrome / Cancer risk / Surveillance / NONPOLYPOSIS COLORECTAL-CANCER / ENDOMETRIAL CANCER / MUTATION CARRIERS / CLINICAL MANAGEMENT / SYNDROME FAMILIES / GEOLYNCH COHORT / TUMOR SPECTRUM / RISK / HNPCC
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-27058561
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : https://hdl.handle.net/11370/4dadd914-14c5-462f-8bd6-6a71a1d33a4e

The Dutch Hereditary Cancer Registry was established in 1985 with the support of the Ministry of Health (VWS). The aims of the registry are: (1) to promote the identification of families with hereditary cancer, (2) to encourage the participation in surveillance programs of individuals at high risk, (3) to ensure the continuity of lifelong surveillance examinations, and (4) to promote research, in particular the improvement of surveillance protocols. During its early days the registry provided assistance with family investigations and the collection of medical data, and recommended surveillance when a family fulfilled specific diagnostic criteria. Since 2000 the registry has focused on family follow-up, and ensuring the quality of surveillance programs and appropriate clinical management. Since its founding, the registry has identified over 10,000 high-risk individuals with a diverse array of hereditary cancer syndromes. All were encouraged to participate in prevention programmes. The registry has published a number of studies that evaluated the outcome of surveillance protocols for colorectal cancer (CRC) in Lynch syndrome, as well as in familial colorectal cancer. In 2006, evaluation of the effect of registration and colonoscopic surveillance on the mortality rate associated with colorectal cancer (CRC) showed that the policy led to a substantial decrease in the mortality rate associated with CRC. Following discovery of MMR gene defects, the first predictive model that could select families for genetic testing was published by the Leiden group. In addition, over the years the registry has produced many cancer risk studies that have helped to develop appropriate surveillance protocols. Hereditary cancer registries in general, and the Lynch syndrome registry in particular, play an important role in improving the clinical management of affected families.