Klinefelter's Syndrome
Association UK
Charity Number 1058319 (Keywords: XXY, 47XXY Klinefelter)
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”.
Study 1: A needs analysis questionnaire which will explore the concerns of people with KS. This will be available to complete (via post, email and online) from Easter-time until the Autumn.
Non-members are also welcome to complete a questionnaire (Download here).
Study 2: Interviews, carried out either in groups or one-to-one, to investigate the experiences of people living with KS and to identify their unmet needs. This is likely to start in the Autumn.
The KSA seeks an authoritative set of data with which to influence Service Delivery for KS patients and the results are likely to available in the early part of 2009.