Researchers from the University of California, San Francisco and Pacific Graduate School of Psychology are planning a new study investigating social issues facing MPS II patients of all ages. The goal is to gather information of daily behavior and the impact of the disease on family functioning, gathering information on health-related quality of life, adaptive behavior, and the behavior of people with MPS II and its impact on family function.
If you choose to participate, you will be asked to complete questionnaires about how you or your child are living in the presence of a chronic illness. Your individual responses will be kept completely confidential. Participation in this study will take approximately one and a half hours for caregivers, and only about 15 minutes for patients. The questionnaires can be completed over the phone.
If you are interested in participating, you may contact Dr. Wendy Packman or Mary Needham at the Pacific Graduate School of Psychology by calling (650) 421-4870 begin_of_the_skype_highlighting (650) 421-4870 end_of_the_skype_highlighting or email us at MPSresearch@gmail.com. We will be happy to answer any questions you may have.
You can also leave your contact information with your local MPS Society with permission for us to contact you.
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