| vfmodell | -- 08-18-2005 @ 1:27 PM |
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DO YOU HAVE A CHILD BETWEEN 3 AND 18 WITH PRIMARY IMMUNODEFICIENCY? Then you and your child may be interested in participating in a novel study examining the relationship between illness events, thoughts, and feelings among children with Primary Immunodeficiency and their caregivers. Through this project we hope to improve medical services and develop programs to help families achieve optimal physical and psychological health. WHAT ARE THE GOALS OF THE STUDY? To examine the thoughts and feelings that children with Primary Immunodeficiency and their caregivers have about their illness. To examine how illness events are related to one's thoughts and feelings about their Primary Immunodeficiency. WHAT ARE THE BENEFITS OF PARTICIPATING IN THIS STUDY? There may be no direct benefit to you and your child but you will be contributing unique knowledge about how to help other children diagnosed with Primary Immunodeficiency. WHAT WILL WE ASK YOU AND YOUR CHILD TO DO? You and your child will be asked to complete a packet of questionnaires; this should take approximately 45-60 minutes. Questionnaire packets will be sent to your home with a postage paid envelope for you to return the relevant forms. We will also ask you to fill out the same questionnaires 6-months and 12-months after you enroll in the study. All families always have the right to refuse or withdraw from the study at anytime without it affecting the care of the child. Compensation will be provided. WHO ARE WE? The principal investigator of this study is Dr. Dennis Drotar, Division Chief, in the Division of Behavioral Pediatrics & Psychology, Department of Pediatrics at the University Hospitals of Cleveland and Rainbow Babies and Children's Hospital. HOW CAN YOU PARTICIPATE? Please email, idproject2005@yahoo.com, to request more information about participating in this important study or call study staff at (216) 844-8172 if you are interested in participating. If you agree to be contacted, you will receive an e-mail or phone call within the next week from the project coordinator, Ahna Hoff, Ph.D., who will describe the study to you in detail. If you decide to participate, please note that you may withdraw your participation at anytime. This message was updated on 8-18-05 @ 1:34 PM This message was updated on 8-19-05 @ 10:16 AM This message was updated on 8-19-05 @ 10:18 AM
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