This Survey is now closed. Preliminary results are below.
The survey generated a tremendous response, with 336 KD men and 66 female carriers participating.Results have been forwarded to researchers at Nagoya University who developed the survey. They will analyze the data and compare it to results from the survey conducted in Japan. Their findings will be published in a scientific paper that will be shared with KDA members when it is available.
- 97% of KD men and 56% of the female carriers have taken genetic testing for SBMA.
- While almost 100% of the respondents in both groups know that SBMA is a genetic disease, just 52% of KD men and 30% of female carriers know the specific gene that causes SBMA.
- 84% of KD men and 93% of female carriers share information about their SBMA with family and/or friends.
- 80-90% of respondents in both groups would recommend testing for at-risk males and females, and about two-thirds in each group recommend early testing.
- 70% of KD men and 65% of female carriers have never had genetic counseling regarding SBMA; 62% of KD men and 48% of female carriers are not familiar with a genetic counseling service.
- 60% of KD men and 74% of female carriers responded that they do not need a genetic consultation service.
We are also reviewing answers to the last question requesting additional comments. These comments, in addition to overall survey data, will help focus KDA’s educational efforts on the genetics of Kennedy’s Disease. You’ll be hearing more from us about this topic in the future.
Thanks again to those of you who participated in the survey. Your responses are valuable contributions to an important area of SBMA research.
Sincerely,
KDA Board of Directors
As part of our effort to build stronger ties with the global KD community, we are undertaking a project with our Japanese counterparts and would like to request your help by participating in a survey of SBMA genetic knowledge.
Researchers at Nagoya University developed and conducted this survey in Japan and are inviting KDA members to participate to allow for a cross-cultural comparison. Upon completion, this research will be published as a further contribution to the understanding of SBMA transmission among families. In addition, the survey will help improve public knowledge and understanding of SBMA, build a foundation for communications between patients and researchers, and create a database for further research. Results of the survey will also help KDA determine whether we need to refocus our educational activities.
This is an anonymous survey and should take 10-15 minutes to complete.There are separate surveys for KD men and female carriers.
Because KDA members live in many countries, the survey includes a question about the country you live in. This is an important data point for analysis in a cross-cultural survey.
We'd like to have all surveys completed within 30 days, if at all possible, or by 31 August. (Responses will be accepted until 15 September 2023.)
Thanks very much for your help in contributing to this study.
Sincerely,
KDA Board of Directors
