03/25/2017
Hello, AmeriFace/cleftAdvocate Families!
As the largest, most active support organization for the cleft/craniofacial community, many of our families will remember participating in the very first phase of this study. And now it's time to rally the troops again! If you have a child age 3 or younger, born with a cleft lip with or without cleft palate, this is your opportunity to shape the future of care for your child for years to come! Click now!
https://surveys.seattlechildrens.org/datstat/collector/Survey.ashx?Name=ICOO_parent_prioritization_survey
Below is the survey introduction from the researchers - my friends and colleagues who take the care of your children very seriously, who have worked tirelessly for decades to improve on treatment and outcomes. Your input is desperately needed. Should you have any questions, feel free to contact me or the researchers at your convenience. [email protected]
ICOO Introduction:
Researchers in Seattle and Chicago are inviting parents of young children with a diagnosis of a cleft lip with or without palate to join this research study. The goal of our study is to create a questionnaire that will help researchers better understand aspects of health that are unique to infants with clefts. In a previous part of this study, we asked caregivers to share about their child’s cleft, cleft treatment, and observations of their child’s health and well-being.
In this next part of our study, we need parents and caregivers who have a child who is three years old or younger, and has a diagnosis of a cleft lip with or without cleft palate, to help us! We are asking parents to take the observations we’ve received from previous parent interviews and prioritize them, so we’ll know the most important items to include in our questionnaire.
To learn more about the study or take part in the survey, please go to:
https://surveys.seattlechildrens.org/datstat/collector/Survey.ashx?Name=ICOO_parent_prioritization_survey
