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NP-C Patient Flow Study 2017

Posted: 20.09.17

We are pleased to inform you about an opportunity to share your story of living with Niemann-Pick Type C (NPC) in a market research study.

An independent market research organisation, Magnolia Innovation, is currently conducting research with people, or parents of children, who have NP-C.

The goal of the research is to understand the challenges of diagnosis, care and everyday activities of living with NPC.  Magnolia would be very grateful to hear your stories and experiences in a one-hour phone interview to understand more about this condition.

Magnolia has assured us that the information you share about your personal experience will be held confidential, and not used for marketing purposes or shared with the sponsor of this study.

A report outlining the overall results of this survey will be prepared for the company sponsoring this research.  The results from this research will facilitate understanding of NP-C and how patients can be diagnosed sooner and receive the appropriate care they need.

The research will also be used to guide the development of patient information materials and support programs for people living with NPC.

The questions asked in this research study will be about the things that happened leading up to, and after the diagnosis of NP-C.

For example, you might be asked about what signs and symptoms first led you to think that you should consult a doctor.  Or, you might be asked about your visits with the doctor and other medical professionals, what was discussed, and how they arrived at the diagnosis of NPC.  You might also be asked about the feelings and emotions you experienced when learning about this diagnosis, and what types of informational resources you found to be helpful in getting to understand the condition.

If you are interested in participating in this research, please e-mail Magnolia:

They will arrange to speak to you by phone to discuss the research study further and to make sure you are comfortable with the research objectives and interview process.