National Alpha-1 Registry
The National Alpha-1 Registry began in 2004. It is a confidential database that records medical information from Alpha-1 individuals. The registry is a vital tool for monitoring disease progression and provides a wealth of valuable data. The registry improves our understanding of the condition leading to better treatment of Alpha-1 patients. For example several questions remain unanswered in Alpha-1. It is still unknown why some Alpha-1s do better than others, despite having the same condition. We also do not know why some Alpha-1s develop liver disease and others do not. A well-designed and well-maintained registry can help answer these questions. An active registry can also facilitate clinical research and help to design effective clinical trials.
Recruitment for our registry is ongoing and our ultimate goal is the enrolment of all Alpha-1 patients in Ireland on a world-class registry. Guided by the principle of informed consent and respecting privacy laws, there are over 250 Alpha-1 individuals from 29 counties in Ireland included on the registry to date. Medical information such as weight, gender, type of Alpha-1, lung function tests, liver function tests, lung and liver scans, hospitalisations and infections is collected and stored on the confidential registry. This priceless patient registry will increase our understanding of Alpha-1, and lead to real improvements in the diagnosis, understanding, management, and treatment of the disorder.
Why are registries important?
A national patient registry is a valuable tool for:
- learning more about a condition,
- improving patient well-being and saving lives,
- effectively managing resources,
- saving money by improving purchasing processes, and
- efficiently delivering quality patient care.
National Alpha-1 Biobank
The National Alpha-1 Biobank study aims to find out why some people develop lung disease and others do not. Cigarette smoking is the major risk factor for the development of lung diseases such as chronic obstructive pulmonary disease (COPD). However, we cannot explain why some smokers develop lung disease and others do not. Alpha-1 antitrypsin (AAT) deficiency is the only proven genetic risk factor for COPD despite years of research. We know other genetic factors must be important for the development of COPD and the search for these factors is ongoing. In Ireland we have the opportunity to perform research of the highest quality due to our small size and unique genetic makeup. We aim to build a large collection of DNA and blood samples from individuals with lung disease and smokers, known as a “biobank”.
This biobank will be a vital tool for the study of lung disease and lay the foundations for future research into genetic lung disease for many years to come. The clinical importance of this study is underlined by the fact that up to 300,000 people may be suffering from COPD on the island of Ireland. If we can discover new genetic risk factors involved in the development of COPD, we can begin to design new therapies for COPD patients.