Dear LHON Community,
This message is to inform you that you are invited to participate in a research study. As someone with Leber’s Hereditary Optic Neuropathy (LHON) and a Counseling Psychology Ph.D. candidate, I recognize many of the challenges of adjusting to this condition. While there is so much to explore on the experiences of individuals with LHON, there is almost no published research on the psychological impact of this condition. This project aims to add knowledge to a field that can ultimately tailor current resources and create new ones for the unique needs of individuals with Leber’s Hereditary Optic Neuropathy.
To make your participation as brief as possible, I have created an online survey that will only take about 30 minutes or less to complete.
If you are 18 years or older, have lost vision due to Leber’s Hereditary Optic Neuropathy (LHON), and have been diagnosed with LHON, I invite you to take part in this survey. As someone with LHON, I am interested in understanding the challenges that come with adjusting to this condition and how factors such as social support from family, friends, and a significant other can aid in the process. Your participation in this study is completely voluntary. You may withdraw from the study at any time without consequence. Your anonymity will be maintained throughout all aspects of the study. Any publication of the data from this study will in no way identify you and results will be reported in combined form only. All material will be collected in the strictest confidence. Completed responses to questionnaires will be kept in a secure location and will be accessible only to myself and my academic advisor, Dr. Laura Palmer. The data will be stored electronically on a USB memory key and kept in a locked, secure physical setting.
Your participation provides useful information on the adjustment that occurs following an LHON diagnosis. Personally, this study may also be useful to increase your self-awareness. This survey includes a demographic form, and two scales to measure how vision impairment has impacted you and the role that social support plays in adjustment.
To begin the survey, click the following link: http://www.research.net/LHON
This project has been reviewed and approved by the Seton Hall University Institutional Review Board (IRB) for Human Subjects Research. Questions about the research subject’s rights should be directed to the Director of the IRB at Seton Hall University, Dr. Mary F. Ruzicka, Ph.D. at (973)-313-6314. Thank you for your consideration to participate.
To begin the survey, click the following link: http://www.research.net/LHON
Sincerely,
Jonathan W. Dator, M.Ed.
TheGeneticHouse 