Optic Nerve Hypoplasia Disease Distribution Survey

This survey is being conducted by Mark Borchert, M.D. and Pamela Garcia-Filion, M.P.H.. If you have any questions regarding this survey, you can contact us at 323-361-6219 during the hours of 8 A.M. and 4 P.M. Monday through Friday. This study is approved by the Committee on Clinical Investigations 323-361-2265.

Purpose

The following survey is being used to gather information on how cases of optic nerve hypoplasia (ONH) are spread across the United States and to determine if there are unique distributions of this disease. Participation is available to families with a child diagnosed with ONH (or SOD) and is completely voluntary. This survey does not require that you identify
yourself.

Survey Directions

Please complete this survey if you are a parent to a child with ONH. If you are an adoptive parent, please only complete if you have accurate knowledge of the birth mother's residence during pregnancy. Please do not complete the survey if you lived outside of the United States 3 months before your pregnancy or during your 1st and 2nd trimesters. Completing this survey is an indication of your consent to participate in this survey research.

To submit this survey on-line, complete the survey and click on the 'SUBMIT' button on the bottom of the last page.

To mail this survey. If you prefer, you can print this survey, complete it and then mail to us at:

Attn: ONH Research Program
Children's Hospital Los Angeles
4650 Sunset Blvd. MS #88
Los Angeles, CA, 90027

Please DO NOT complete more than one survey.

Section 1: If you have one child with ONH, please only answer the questions in Section 1.

Section 2: If you have more than one child with ONH, please also answer the questions in Section 2 for your second child.

Section 3: (Optional) Contact Information: The results from this survey will be used to evaluate trends in the distribution of ONH cases in the United States. It is possible that additional research studies into possible causes of distribution trends may develop from this survey. If you would like to be contacted to participate in future research about the distribution of ONH, provide your contact information in Section 3.

You will only be contacted if your information is relevant to the study. This information will be available only to study directors. Providing such information is completely voluntary and is not necessary for participation in this survey. If you provide this information, it is an indication of your consent to be contacted in the future.

For on-line submission of survey: If your computer has a virus, trojan horse, or other malicious program, your responses may be vulnerable to viewing by unauthorized persons up until you click the 'SUBMIT' button.

Certificate of Confidentiality

To help us protect your privacy, we have obtained a Certificate of Confidentiality from the National Institutes of Health. With this, the researchers cannot be forced to disclose information that may identify you, even by a court subpoena, in any federal,state, or local civil, criminal, administrative, legislative, or other proceedings. The researchers will use the Certificate to resist any demands for information that would identify you, except as explained below.

You should understand that a Certificate of Confidentiality does not prevent you or a member of your family from voluntarily releasing information about yourself or your involvement in this research. If an insurer, employer, or other person obtains your written consent to receive research information, then this Certificate can not withhold that information.

This information will be kept private, however there is the potential for unintentional disclosure of confidential information. To withdraw at any time, please contact us at 323-361-6219.

Your participation in this research is voluntary. Your choice about whether or not to participate will have no affect on any future access for you or your child to care, services, or benefits at Children's Hospital Los Angeles.

Survey will be back soon.