LAL‑D Study – Phase 3
the University of Rochester (USA) is currently conducting Phase 3 of its research project on Lysosomal Acid Lipase Deficiency (LAL‑D).
Our organization is not conducting this study, but we would like to help share this opportunity and encourage families to participate, as it aims to better understand the real-life impact of LAL‑D.
🔍 About Phase 3
This research project is conducted in several phases.
👉 You or another family member may have already participated in Phase 1 or Phase 2, and you are now invited to continue with Phase 3, which is essential to complete the study.
What does participation involve?
- Completing one or two online surveys (about 10 minutes each)
- Taking part in an audio-only interview lasting up to 60 minutes
- Sharing experiences about the physical, emotional, and mental impact of LAL‑D
Who can participate?
Multiple family members of the same individual with LAL‑D may participate, including parents, grandparents, siblings, aunts/uncles, partners, or other caregivers, provided they:
- Are current or former caregivers of a person with LAL‑D
- Are 18 years of age or older
- Speak and understand English
- Live in the U.S., Canada, the U.K., the European Union, or Australia
For more information or to participate, please contact the research team directly:
Charlotte Engebrecht – Charlotte_Engebrecht@URMC.Rochester.edu
Matthew Rathbun – Matthew_Rathbun@URMC.Rochester.edu
