- Engage PRP patients worldwide in order to collect information about the burden of PRP. This is where we are today.
- Generate PRP-specific data on the impact of dermatological diseases
- Raise the “burden ranking” of dermatology diseases — including PRP
- Lobby for better PRP treatments and enhance the support needed for the PRP global community,
What are the possible benefits of our participation?
The research findings will help raise awareness among decision-makers, clinicians and researchers. This will, over time, improve the experience of patients and help us to understand how to improve care and treatment of people living with a dermatological condition like PRP.
How will our information be kept confidential?
All electronic data will be kept on a password-protected server in accordance with the European Data Protection Act and will only be accessible to the research team and regulatory authorities.
Who is organizing and funding the GRIDD project?
GRIDD is a project initiated and funded by the International Alliance of Dermatologist Patient Organizations (IADPO). It is being co-led by researchers from Cardiff University (Professor Chris Bundy) and Hamburg University (Professor Dr. Matthias Augustin)
The Worst-Case Scenario Perspective
The best part of the GRIDD experience as a participant was the fact that I didn’t have to remember specific dates, medications or come up with details that required research. Everything I needed to know was already in my head. It’s a simple process.
- Read a statement, e.g., I struggle to fall asleep.
- Next, think about YOUR worst-case scenario. In my case it was VERY MUCH until I discovered a “sleep cocktail” that worked: hydroxyzine, Ambien and drink no water after 9:00 PM.
- Select one of the five options that reflects your worst-case scenario.
❏ Not at all or not applicable
❏ Very much
Our participation in the GRIDD survey is critically important to the PRP global community. GRIDD is an opportunity for all of us to document the impact pityriasis rubra pilaris on your own life.
1. Physical impacts, e.g., pain, itch, mobility, vision, sleep, etc.
2. Daily life impacts , e.g., daily routine, leisure, work and school
3. Psychological impacts, e.g., stress, depression, control, coping, etc.
4. Social impacts, e.g., isolation, relationships, people who stare, etc.
5. Financial impacts, e.g., lost wages, affordability of treatments, etc.
6. Medical impacts, e.g., limited access to dermatological services and treatments
If WE don’t share our PRP insights, how will the rest of the world learn about us?