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Niemann-Pick Type C1 Disease Interview Research Study

Niemann-Pick Type C1 Disease Interview Research Study

Are you currently caring for someone with Niemann-Pick Type C1 Disease (NPC1)?

Interested in participating in an online (via Zoom) or telephone interview?

  • Worldwide Clinical Trials is looking for approximately 10-15 individuals who are currently caring for someone with NPC1 in the US, and who are at least 18 years of age.
  • If you qualify for the study, you will be asked to participate in one Zoom or telephone interview.
  • Each interview will last no more than 60 minutes. During the interview, you will be asked questions about symptoms and impacts the person you are caring for may have experienced as a result of their condition. You will also be asked to complete a new questionnaire and provide feedback on the questionnaire during the interview.
  • The interview will be conducted by a member of the project team from Worldwide Clinical Trials, a research organization, with experience in this type of research.
  • Each interview will be scheduled at a time that is convenient for you including during the day, during the evening or on weekends.
  • After you complete the interview, you will receive a $20 in the form of a pre-paid debit card.
  • The study has received IRB approval.

Please email study coordinator Jessica Riley, at by December 1st to learn more about the study.

Version 2.0 29SEP2020