Research News
1. Why are we doing this work?
A: Because the care received by those with KS is inconsistent. It varies according to the area you live in, the experience of your family doctor or consultant and the policies of the local Health Care organisations.
2. If I fill a questionnaire in can I be identified?
A: Please answer all the questions including the ones about where you live. This is particularly important if you are outside the UK. When the questionnaire is received in Bristol an administrator will mark both parts of the questionnaire with a unique reference and will file the first part securely. Only the second part will be given to the researchers who will have no information about who you are, or where you are. No person will be individually identified in the results. The administrator will supply only global details for Country of Origin statistics.
3. Will the KSA see the completed questionnaires?
A: No, only the researchers will see them.
4. What will be done with the results?
A: The results will be published by the University of the West of England and will go to the KSA as the client organisation. The KSA will provide details of the findings on the KSA Public Website and on XXYTALK.COM. Posters
5. What next?
A: The KSA will use the results to influence Policy in the UK and is happy to assist other XXY organisations in doing the same in their countries. This is only part 1 of the Study. Details of part 2 will follow.
KSA announces a Research Project in association with the Centre for Appearance Research at the University of the West of England, Bristol, for the purpose of “Exploring the needs of people with Klinefelter’s Syndrome and their levels of satisfaction with their current provision of care”.