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Lorem Ipsum Dolor Spring 2016
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Do you know parents of children with albinism?
Please pass along this information asking parents to share their
experiences and perspectives of medical and educational services.
Parent Experiences and Perspectives on Medical and
Educational Services for their Children with Albinism
Dear Parents,
We are conducting a study that focuses on parents' experiences with medical and
educational services for their children who have albinism. What we learn from
parents will be used to identify practices that work and those that need to be
improved. We will share the results with NOAH and with other parent and
professional groups.
Please complete a questionnaire online at:
www.surveymonkey.com/s/cchmcalbinismsurvey or we can provide a paper copy in
print or in an alternate format, or you may complete it by telephone. No identifiable
information will be requested on the Parent Questionnaire.
If you have questions about the study, would like additional information, or to request
assistance in completing the parent questionnaire, please contact either of us.
Thank you for your help with this study.
Anne L. Corn, Ed.D. Kelly Lusk, Ph.D.
Research Professor (Volunteer) Assistant Professor
Department of Ophthalmology Division of Pediatric Ophthalmology
University of Cincinnati Cincinnati Children's Hospital
phone: 512-371-9945 Medical Center
Anne123C@gmail.com phone: 513-636-4416
kelly.lusk@cchmc.org
Note: This study has been approved by the National Organization for Albinism and Hypigmentation (NOAH) and the
Institutional Review Board (for human subjects) at Cincinnati Children's Hospital Medical Center.
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