The Global Registry of Alopecia areata disease Severity and treatment Safety or GRASS – Pilot Phase
GRASS is an organisation which runs a disease registry study that records, stores and analyses relevant data about the health and medical treatment of people living with Alopecia Areata (AA). It is a member of a developing global network of connected AA patient registries called GRASS-International. This group formed after an extensive international project that included patient organisations, expert physicians, scientists and regulatory and industry representatives. The registry is currently in pilot stage and under development before full release.
A pilot of GRASS was launched internationally in 2022. You may be invited to take part in this AA Registry because you have AA. Before you decide whether to take part, it is important that you understand why the registry has been setup and what it will involve.
Some examples of how your data may be used in an international AA registry:
- To judge which treatments are of greater benefit, how care is improving
- To identify new trends, for example for example an increase in a complication
- To provide information for planning future services for people with AA
- To identify and learn from countries with better patient outcomes
- To identify patient groups who could be approached to take part in particular research studies. Contact for this would only come through your AA care team.
How do I register?
If you do decide to take part, you can find out more in multiple ways:
- Ask your AA doctor or AA care team.
- Phone your treatment centre speak to an AA nurse.
- Email registry@nisrsolutions.com.