Guidelines MMR Databank

The International Collaborative Group on Hereditary Nonpolyposis Colorectal Cancer (ICG-HNPCC) has decided at its meeting in Milan, in 1994, to establish an International Databank of mutations. Päivi Peltomäki (Helsinki Finland) and Hans Vasen (Leiden, The Netherlands) agreed to coordinate the effort under the collective responsibility of the ICG-HNPCC. The newly formed International Society for Gastrointestinal Hereditary Tumours (InSiGHT) will continue these efforts. The progress will be discussed at the regularmeetings of InSiGHT and further decisions concerning the databank will also be made at those meetings.

The aims are to allow for:

1. evaluation of the mutation spectra of the HNPCC-genes;
2.study of the geographic variation
3.discussions towards a consensus on the implementation of mutation detection strategies

Guidelines:

The reported mutations should be treated with extreme caution for diagnostic or population screening purpose, as some of them may not be true mutations. The data are not intended for the use of providing any clinical recommendations.
Any data obtained through the group, if not yet published in a periodic journal, should be treated as privileged information, and one whould not disseminate the information without the consent of the group.
Upon orally presenting unpublished data obtained from any of the InSiGHT databases, the presenting author's slides or overheads should clearly acknowledge the group's name, acronym, or contributor's name (if specifics are discussed). Group members retain the right to publish their own contributed data without prior discussion with other participants. However, should they wish to include information contributed by others, consent should be obtained from that contributor. The involved groups should seek ways to resolve amongst themselves to publish jointly (i.e. listing all contributor's names) or as InSiGHT as a whole. The authorship may include one or several other members of the group depending on the involvement. Publication of mutation information is strictly prohibited without the consent of the principal group(s) who reported the mutation.

Data entry/confidentiality:

Data entry will be accepted by electronic mail deposited at the site of The Netherlands Foundation for the Detection of Hereditary Tumours (webmaster@insight-group.org). A Mutation submission form is for registrated members also available on our site.

Application

The databank will be open for all InSiGHT members and investigators working in the field. Continued access is contingent on abiding by rules regarding use and acknowledgement of the data contained herein. By joining this group, investigators are encouraged to share all efforts and work on the mismatch repair genes.

Back to InSiGHT mutation database