The University of Rochester (USA) is conducting an international study aimed at current or former caregivers of individuals with Lysosomal Acid Lipase Deficiency (LAL-D). The goal is to identify, through an anonymous survey, the symptoms and aspects that most affect patients, according to the experience of their caregivers. This information will help develop a specific tool to improve clinical care and future treatments for LAL-D.
Who can participate?
- Current or former caregivers of individuals diagnosed with LAL-D.
- Adults aged 18 or older, who can read and understand English.
- Residents of the USA, Canada, United Kingdom, European Union, or Australia.
What does participation involve?
- Completing an online survey (20–30 minutes).
- Responses are anonymous and confidential.
- Both caregivers (for example, mother and father) can participate if applicable.
- You are not required to answer any questions that make you uncomfortable.
Why is participation important?
- Your responses will help identify the most relevant symptoms and issues for patients and their families.
- The results will contribute to the development of new tools to assess and improve care for LAL-D.
- Participation is voluntary, involves no risks or financial compensation, and you may withdraw at any time.
Access the survey: https://redcap.link/lald
For more information, please see the attached documents or contact the research team:
