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Research currently being conducted on Optic Nerve Hypoplasia in The Vision Center at Children’s Hospital Los Angeles:
ONH Registry Study
The ONH registry is a long-term prospective study of children with ONH, which collects information on clinical findings and functional outcomes, including visual acuity, endocrine dysfunction, neurologic deficits and cognitive abilities. Participants are less than 24 months of age upon enrollment and followed annually through puberty. The objectives of this research registry are to determine the clinical prenatal risk factors of ONH and to investigate the clinical characteristics associated with functional outcomes in order to identify opportunities for therapeutic and rehabilitative interventions. Additionally, this research registry functions as an umbrella study for the development of more specialized investigations of the syndrome.
This study is funded in part by the One Small Voice Foundation and the Southern California Clinical and Translational Science Institute (SC CTSI).
ONH Disease Distribution Survey
The ONH disease distribution survey is designed to examine the geographic distribution of ONH across the United States. This is a national on-line survey available to all families with a child diagnosed with ONH. The brief survey asks for the child’s birth season/year, the child's race/ethnicity, and the birth mother's residential address during the three months prior to conception and during her 1st and 2nd trimesters. To participate, please go to www.onhsurvey.org to complete the survey. The survey takes 5-10 minutes to complete.
The ONH disease distribution survey received a Certificate of Confidentiality by the National Institutes of Health. This study is funded in part by Prevent Blindness America.
Endocrine Dysfunction and Growth Hormone Deficiency in Children with ONH
Growth hormone deficiency is common in children with ONH. This study is designed to determine if early treatment with growth hormone in children with ONH and growth hormone deficiency can prevent adverse outcomes associated with ONH. The study will also evaluate the effect of treatment on growth and weight in children with ONH. More information can be found on the clinical trials website.
This study is funded by Genentech, Inc. and Southern California Clinical and Translational Science Institute (SC CTSI).
Identification and Treatment of Sleep Dysfunction in Children with ONH
The purpose of this study is to identify sleep problems due to biological clock dysfunction in children with ONH and to develop effective treatments for this condition. Participants are 2-10 years of age. More information can be found on the clinical trials website.
This study is funded by the Thrasher Research Fund.
Autism in Children with Vision Impairment
Assessing autism in children with vision impairment is a significant unmet need. This study will include ten subjects with severe vision impairment (due to any cause) and their parents - approximately half of study subjects are suspected to have an autism spectrum disorder while the other half exhibit no signs of autism. Participants will be 5-13 years of age.
This study is funded by the Joseph Drown Foundation.
For questions regarding the ONH research program, please contact:
Cassandra Fink, MPH
Supervisor, Clinical Trials
323-361-2267
cfink@chla.usc.edu
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