DEE Natural History Study
Developmental and Epileptic Encephalopathy Research (DEER) program — genetic-epilepsy@unimelb.edu.au · +61 3 9035 7344 · geneticepilepsy.org
Research
Current studies recruiting people with developmental and epileptic encephalopathies
Below are current research studies that are actively recruiting participants from the DEE community. If you are interested in participating, please contact the research teams directly using the details provided.
SIBS-ONLINE
Supporting siblings and parents of patients with DEEs. UNSW Sydney — maddison.c.smith@unsw.edu.au · 0490 189 961
Research invitation: How caring for a child with DEE affects caregivers
Parents and caregivers are invited to share their experiences of caring for someone with a developmental and epileptic encephalopathy (DEE).
This study aims to understand how caring affects caregivers’ lives and which impacts matter most to them. The findings may help improve understanding of families’ experiences and support the inclusion of caregiver outcomes in future research.
Who can take part?
Parents and caregivers aged 18 years or older who care for a child or person with a DEE.
What does participation involve?
To register your interest, complete a short questionnaire. This will help the research team select a diverse group of participants.
Selected participants will receive an email invitation to join a one-hour online small-group discussion about how caring affects different parts of family life. Your views will help identify the most important outcomes to focus on in future research.
Recognition of your time
Participants will receive a $40 gift card for taking part in a focus group, and/or a $20 gift card for taking part in an interview.
Register your interest
Complete the short questionnaire to register your interest in the study.
For more information, contact Amir Haddadfar at amir.haddadfar@student.unimelb.edu.au.