We are very happy that the first version of the HCCN-website has now been launched. The main goal of the website is to provide information on hereditary colorectal cancer for medical professionionals as well as for patients in the Middle East and North African Countries. We hope that this information will help to identify individuals at risk for inherited forms of colorectal cancer and to encourage them to participate in colonoscopic surveillance programs
.In the first version of the website, guidelines for management are available for Lynch syndrome, familial adenomatous polyposis (FAP), MUTYH-associated polyposis (MAP) and constitutional mismatch repair deficiency (CMMRD). In addition, patient information pampflets are available for patients with Lynch syndrome and FAP.
The website will also serve as a platform for communication between members of the HCCN-network. We hope, for example, to identify all expert centres for mutation analysis and genetic counselling in each country and provide the adresses on the website which will allow referral of patients suspected of hereditary colorectal cancer to these centres. At present we have representatives from 7 countries including Palestine, Turkey, Iran, Lebanon, Jordan, Sudan and Algeria and hope that by the end of the year all Middle East and neighbouring countries are represented. All individuals who are interested to become part of this network are very welcome.
Currently, all information is written in English but in the future it will also be provided in Arabic and hopefully in other languages. Help from individuals who want to volunteer with translating parts of the website is very welcome.
Finally, if you have suggestions for improvement of the website, please let us know!
Zeinab Ghorbanoghli MD and Hans Vasen MD, PhD
Hereditary Cancer Registry
Leiden University Medical Centre