Attitude of Creutzfeldt-Jakob disease relatives towards dementia research

To assess the attitude of Creutzfeldt-Jakob patients relatives and of relat ives of cognitively unimpaired individuals towards dementia research by a q uestionnaire survey. Methods: 42 relatives of cases and 41 controls who wer e interviewed within the german part of the European Union collaborative st udy of CJD were asked to answer structured questions concerning their perso nal attitude towards three hypothetical projects: a diagnostic research pro ject without personal benefit, a project with possible therapeutic option a nd a study of hereditary dementia. Results: 31 relatives of cases and 26 re latives of the controls were willing to participate in this survey. In both groups the willingness to participate in dementia research is high. Resear ch without approval of patients or relatives is rejected in most cases. Rel atives want to decide to which extent genetic results are used for scientif ic of personal purposes. Conclusions: Although research with (and for) deme nted patients is restricted by the law in many countries to certain limits, relatives are willing to participate in these efforts to a greater extend than expected. As long as the responsible physicians will respect their dem ented patients as severely ill human beings, the view towards research is t his field might be as positive as shown in this sample.