Calling all parents who have children under 12 years old with NP-C
You may recall that Niemann-Pick UK has been supporting Aston University in their work to deliver a research study titled “Development of health-related quality of life scales for patients and parents affected by Niemann-Pick Disease Type C”, which aims to bring benefits for the NP-C community.
This study has ethical and R&D approvals through the appropriate UK academic channels and in order to make further progress, research student Lydia needs your help.
Lydia is now working on the second phase of the Quality of Life Study and they need your help.
Lydia needs the help of as many parents who have children with NP-C (under 12 years old) to answer the survey. This is to ensure that this study is able to develop valid and reliable scales that can be used in consultations and research.
If you would like to participate, please click on the link below, which will take you directly to the questionnaire:
https://astonpsychology.eu.qualtrics.com/jfe/form/SV_cPhwXA32wHsDwjP
If you have any queries or would like further information, you can contact the NPUK Central Office by email info@npuk.org or phone 0191 415 0693 or you can contact Lydia direct: astonlr@aston.ac.uk
