Information for participants
Clinical registries are important to monitor and improve the quality of healthcare.
The information collected will support dermatologists (and other health professionals) in providing the best care for those living with skin conditions, by identifying what increases someone’s risk of developing a skin condition, the impact skin conditions have on a person’s quality of life, the effectiveness of different treatments and the frequency of side effects.
The registry will also provide a resource to support dermatology research.
What participation in the registry involves?
Participation in the registry will require you to read and understand a participant information sheet that will inform you of the purpose of the registry, what participation in the registry involves, the risk and benefits of participating in the registry, how the data is collected and stored, and how data be used.
Registry participants are required to provide answers to some personal questions, if there is any family history of certain diseases, if you have been diagnosed with any other medical conditions, lifestyle factors (e.g. smoking, alcohol use), and the impact your skin condition has on your life at time of enrolment.
Every time a registry participant attends the clinic, we will check if their smoking or drinking habits have changed and ask again about the impact their skin condition has on their life. This will help us determine if the treatment received is reducing symptoms and improving quality of life.
Participation is voluntary.
Participation in the registry is voluntary and will not affect treatment at any site. Participants can withdraw their consent at any time by talking to their treating clinical team or contacting the registry directly.