Cardiff University seeking participants for CAG repeat "grey area" research study
Cardiff University are looking for adults, aged 18+, who have received a Huntington's disease genetic predictive test result between 27 and 39 CAG repeats (inclusive) to take part in an interview that aims to explore the psychosocial impact of receiving a test result in this “grey area”. It is hoped that results from this study may help inform genetic counselling practice in this area.
What to expect
Participating in the study involves a single, online interview consisting of open-ended questions that will last approximately 60 minutes. Examples of topics that the interview will include: family experiences of Huntington's disease, experiences of receiving an Intermediate Allele or Reduced Penetrance allele test result, the role of pre-test counselling and post-test follow-up in their experience and perceived beliefs around Huntington's and their test result.
For more information about this study or to volunteer as a participant, please contact Jennifer De Souza, MSc Genetic and Genomic counselling student researcher at Cardiff University at [email protected]. The project supervisor is Professor Angus Clarke, Clinical Professor and Lecturer on the MSc in Genetic and Genomic Counselling programme at Cardiff University.
If you are affected by Huntington's disease and need support or advice, please contact us on 0151 331 5444 or email [email protected].
Cardiff University are looking for adults, aged 18+, who have received a Huntington's disease genetic predictive test result between 27 and 39 CAG repeats (inclusive) to take part in an interview that aims to explore the psychosocial impact of receiving a test result in this “grey area”. It is hoped that results from this study may help inform genetic counselling practice in this area.
What to expect
Participating in the study involves a single, online interview consisting of open-ended questions that will last approximately 60 minutes. Examples of topics that the interview will include: family experiences of Huntington's disease, experiences of receiving an Intermediate Allele or Reduced Penetrance allele test result, the role of pre-test counselling and post-test follow-up in their experience and perceived beliefs around Huntington's and their test result.
For more information about this study or to volunteer as a participant, please contact Jennifer De Souza, MSc Genetic and Genomic counselling student researcher at Cardiff University at [email protected]. The project supervisor is Professor Angus Clarke, Clinical Professor and Lecturer on the MSc in Genetic and Genomic Counselling programme at Cardiff University.
If you are affected by Huntington's disease and need support or advice, please contact us on 0151 331 5444 or email [email protected].