Thank you for donating!

You can donate using the following services.

Survey Opportunity: Qualitative Analysis of Niemann-Pick Type C 5-Domain NPCCSS

Posted: 26.07.19

Survey Opportunity: Qualitative Analysis of Niemann-Pick Type C 5-Domain NPCCSS

We are pleased to inform you of a study opportunity available to NPC patients and their families.

Clinical Outcomes Solutions (COS), is a research company conducting research into Niemann-Pick type C (NPC) on behalf of a sponsor, Orphazyme A/S, a pharmaceutical company studying NPC.

The purpose of this research study is to better understand, from the perspective of NPC patients, parents and caregivers, their path to diagnosis, what major health-related events have happened since diagnosis, what their current experience of NPC symptoms is, which symptoms are most important to them, and how these symptoms impact their lives.

The study is open to adult patients diagnosed with NPC plus parents and caregivers of children (6 months or older) with Niemann-Pick Type C. All participants completing the survey (adult patient or caregiver) must be age 18 or older.  The study is restricted to UK participants only.

What does the study involve?

The study has two parts. First, participants will complete a 45-minute on-line survey. Then, some participants will be invited to further take part in a follow-up 60-minute telephone interview. Phone interview participants will also be asked to complete a pre-interview timeline activity that maps out their experiences before and after diagnosis.

Your decision to take part in this research study is voluntary and will not in any way affect the treatment you / the person you care for receives or any other aspect of their medical care.

This research study confidential. Any contact information you provide will only be used for the purposes of compensation and scheduling the phone interview if you take part.

How to Participate:

The survey is on-line.  To participate, you will need to have access to a computer / tablet that is internet enabled.  Access to the study is granted via a unique email link which will be sent to you by the NPUK Team.  For further information or to receive a link, please contact NPUK by email or telephone 0191 415 0693.