Study to Understand Leber Congenital Amaurosis (LCA) from Patients' and Parents' Perspectives

Campbell Alliance is partnering with a pharmaceutical company that is currently developing a potential treatment for Leber Congenital Amaurosis (LCA), and would like to gain a deeper understanding of LCA from the perspectives of patients and parents. Through these perspectives, they can understand how to better educate the community about LCA.

They would like to conduct a 45-to-60 minute telephone discussion with interested LCA patients and parents of LCA children in order to capture their perspectives on living with LCA. Specifically, how has LCA changed your life and/or your child's life?  What were your experiences receiving the diagnosis?  How do you manage and address LCA on a daily basis, and where do you go for more information on the disease?  For your time and insights, participants will receive a $100 honorarium.

They are conducting this research through October 20th and will close this study after the first 10 eligible patients respond. To qualify as a participant in this study, please contact Dr. Mary Lee (<mailto:mlee@campbellalliance.com>mlee@campbellalliance.com<mailto:mlee@campbellalliance.com>) with your responses to the below seven questions:

If you are a patient with LCA, please provide your responses to the below questions:

•         Have you been formally diagnosed with Leber Congenital Amaurosis (LCA) by a physician?

•         When did you receive your LCA diagnosis?

•         Are you willing to speak about your experiences being diagnosed with LCA, your day-to-day experiences living with LCA, and where you go for more information on LCA?

•         Are you fluent in English?

•         Are you over 18 years old?

•         What city, state, and country do you live in?

•         If you live in the US, are you willing to complete a W9 form (required by the IRS; we will not share your personal information with anyone) in order to receive your $100 honorarium?

If you are not a patient with LCA, please provide your responses to the below questions:

•         Are you a parent to a child who has been formally diagnosed with LCA by a physician?

•         How long ago did your child receive the LCA diagnosis?

•         Are you willing to speak about your experiences with your child's LCA diagnosis, your and your child's day-to-day experiences living with LCA, and where you go for more information on LCA?

•         Are you fluent in English?

•         Are you over 18 years old?

•         What city, state, and country do you live in?

•         If you live in the US, are you willing to complete a W9 form (required by the IRS; we will not share your personal information with anyone) in order to receive your $100 honorarium?

Please contact Dr. Mary Lee if you need additional information on this study.

Mary Lee PhD

Senior Consultant

Campbell Alliance

801 Gateway Boulevard

Suite 401

South San Francisco, CA  94080   USA

Voice:  (650) 589-7400 x6138

Fax:     (650) 589-7401

Cell:     (626) 679-6712