BDSRA is leading a new survey-based study and invites all parents and caregivers (current or bereaved) of a child/children affected by CLN2 disease to participate.

Your insights and experiences as a caregiver for an affected child/children are invaluable in helping us to understand and ultimately help improve the standards of care and treatment options for patients. The goal of this survey is to gain insight into the Batten disease community’s experience with current treatment options, the overall understanding of gene therapy, and the hopes and concerns of current and bereaved caregivers when thinking about gene therapy as a possible treatment for CLN2 disease. The responses provided will assist BDSRA and potential industry partners in better understanding your family’s CLN2 disease journey and help guide future therapeutic research strategies.

The survey is open to U.S. and international families. No personally identifiable information will be collected in this survey.

For further information and to complete the survey, please click the button below. For any questions, please reach out to Dr. Ineka Whiteman at research@bdsraaustralia.org.

The final day to complete the survey is Friday, March 29, 2024.

Thank you in advance for your time and participation in this survey.