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Research News Updates and Blogs

The PICTURE Study Calls on PFIC Parents

This study has now ended 

Are you the caregiver of a child with PFIC and live in US, UK, France or Germany?

If yes, the PICTURE study would love to hear from you!

Together with leading specialists and member organisations the PICTURE study aims to understand the disease burden upon patients, their caregivers and from a socio-economic perspective. This is hoped to be achieved by providing the very individuals living with and caring for those with PFIC 1 or 2, the opportunity to have their direct input into the study.

This study hopes to:

  • provide evidence of patient need to support development of future treatments.
  • back up calls for support and awareness for how those with rare childhood liver conditions are impacted on a daily basis.

REGISTER HERE 

In recognition of this invaluable input £30 remuneration will be provided to you or a member organisation of your choice. At the end of the survey you will be redirected to a page to submit your preference for payment.

The process:

  • Follow the link above to be directed to the study registration page.
  • You will then be sent a separate invite for the specific survey via email (please check your junk email). Alternatively, you can also log into your M3 profile and find the study on your dashboard. Please note there may be a delay in receiving the invite (both via email and on your dashboard) if details are submitted outside of normal working hours.

For any general queries contact research-hub@childliverdisease.org. For technical queries regarding the survey contact MAfonso@m3global.com.

 

 

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