One of the aims of kConFab is to perform an annual review of families enrolled into kConFab. The main aim of this annual review is to offer participation to individuals who have become eligible for kConFab since the family collection was completed.

This includes:

1. children who have turned 18 since the family collection was ‘completed’
2. first degree relatives of women how have become affected with breast or ovarian cancer in this period
3. first degree relatives of men and women who have learnt (though attendance at a Family Cancer Clinic) that they carry a BRCA1, BRCA2, ATM, PALB2, p53, pTEN mutation.

The annual review by kConFab will need to link closely with the Clinical Follow Up (CFU) project to avoid contact of the same people by the core kConFab staff and CFU staff in a short period of time. In addition, transfer of information from the CFU staff to kConFab core staff regarding new cases of breast and ovarian cancer in the family is necessary so we can approach newly eligible family members.

The protocol for annual review will be as follows:

1. The kConFab recruiter will contact the Family Contact Person (FCP) to say that annual review is starting, and to ask:
   
   1. if they know of newly affected cases which would therefore render their first degree relatives eligible for recruitment into the study. No person can be approached by a recruiter unless they have first been approached by an enrolled family member. As with the existing protocol, the recruiter will ask the FCP to contact these newly eligible first degree relatives to determine if they would like to receive information about the project. [Care must be taken not to overload the FCP by asking them to make contact with extended family relatives etc.] However, if the “new” reported case of cancer is already a consented kConFab participant, the recruiter can contact this person directly for an update.
      
      If you have been in touch with the FCP in the last 12 months and covered the issue of newly affected cases, then there is no need to call them again for another 12 months.
   
   
   2. if the FCP knows of any new surgeries (including prophylactic). The same steps can be followed as in point a) above for unconsented and consented participants
   
   
2. The recruiter will to try to recruit first degree relatives of newly affected cases of breast and ovarian cancer. The approach could be via the FCP (see above). Alternatively, if the cancer is self reported (to the kConFab recruiter or to the CFU Study) then the recruiter can ask the newly affected case for permission to approach their first degree relatives. If the cancer is not reported by any member of the family (e.g. determined through Cancer Councils) then there is no ethical way that the recruiter can approach the first degree relatives and so this cannot be done.
   
   
3. The recruiter will try to recruit those who turned 18 since last contact. They should only do this by getting permission from a parent who is enrolled in kConFab. If both parents have previously refused participation in kConFab, the recruiter should not consider an approach to the offspring at all. If no parent is alive to request permission to contact the children, then we will need to reconsider if/how we can approach the children on a case-by-case basis, perhaps with the advice of another family participant.
   
   
4. The recruiter will try to recruit first degree relatives of carriers. In reality this is usually impossible to do because the recruiter does not know who the carriers are, and even if they did should not impart this information to the carrier either directly, or indirectly by approaching their relatives. Therefore, at the moment this can only be done if the carrier tells the recruiter of their carrier status, or if the FCC informs the recruiter that the results have been obtained and they can now approach the carrier for contact with their relatives. We do try to have a regular link to the FCCs to determine which carriers have received their results.
   

The source of the information regarding new affection or carrier status (self report, family member, FCC etc) should be recorded to document compliance with Privacy Guidelines.