What is the MIHRA Patient Contact Registry (PCR)?
A contact registry is a list or directory of people who can be contacted in the event something that might be of interest to them arises. A patient contact registry allows patients or their support partners (very close family or friends) to know when an opportunity to participate in research arises.
A patient contact registry is an important avenue of accelerating rare disease research. A contact registry mobilizes participants to assist in providing expertise from people living with a rare disease or their family’s point of view. It can also be used as an means to keep people living with a rare disease on clinical trial opportunities.
Who can join the MIHRA Patient Contact Registry?
The MIHRA Patient Contact Registry is accepting entries from people living with a myositis-related disease, their family, or a representatives from a patient organization. To register for the MIHRA PCR, please see the PCR form below.