A project called the PBC Ireland Patient Registry is helping improve care for people with primary biliary cholangitis (PBC) by connecting patients with PBC in Ireland with researchers and patient groups around the world, according to a recent paper published in the journal Therapeutic Advances in Rare Disease.
In Ireland, there is still very little information about people living with PBC. This lack of data is hindering research, treatment availability and policy development. To help solve this problem, the patient advocacy group PBC Ireland created the PBC Ireland Patient Registry.
Adults with PBC can join the registry by giving consent and filling out online forms. The forms ask about medical history, symptoms like tiredness and itching, treatments people use and their quality of life.
“The PBC Ireland Registry is the first national project created and led by patients to collect information directly from people living with PBC,” said the paper’s authors. “The long-term goal of the PBC patient registry is to become a trusted resource supporting PBC research, care and policy.”
The real-world data can help doctors and researchers learn more about PBC and how it affects people over time. The data may also inform decisions that affect PBC patients and influence health policy.
“This resource will facilitate collaborations with other PBC organisations worldwide and ensure the voices of PBC patients in Ireland are part of local and global conversations about this rare disease,” said the authors.
Read more about PBC treatment and care
When the paper was published, 52 people had joined the registry, and 40 had completed all the forms. A survey showed that most participants were happy with the system. They said it was easy to use, easy to understand, relevant to their lives and respectful of privacy.
Members of the private online community also receive updates about the registry and news about research and treatments.
One limitation of the registry is that past blood test results are not included, because removing personal details from this data is complex and costly.
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