FAQ

PARTICIPANTS OF THE NATIONAL CHEST REGISTRY:-

1. What is a disease registry?

Disease registry is a system used to collects and maintains structured records on the new cases of a specific disease or condition for a specified time period and population. It is importance to calculate incidence rates and risks, as well as to maintain surveillance and monitor trends in disease incidence and mortality.

2. What is National Chest Registry?

National Chest Registry is a multi-center, observational cohort study designed to evaluate the health outcomes of patients. Currently NChR consists 3 sub registries, which are Asthma, Chronic Obstructive Pulmonary Disease (COPD) and Pulmonary Hypertension (PH). The NChR is a service supported by the Ministry of Health (MOH) to collect information about chronic respiratory illnesses in Malaysia, which will enable us to know the incidence rate of the illnesses, to evaluate its risk factors and treatment in the country.

3. What is the purpose of NChR?

The objectives of the NChR are to:

- Determine the demographic of patients registry attending the MOH health clinics/hospital
- Classify the severity/disease control of the diseases according to international guidelines
- Determine the disease control and clinical variables in the past one year
- Determine the disease management
- Determine the complications workload in health clinics/hospitals in the Ministry of Health
- Determine the co morbidity among the patients
- Stimulate and facilitate research activities using this database.

4. Why National Chest Registry?

National chest registry is necessary to determine the burden of chronic respiratory diseases more accurately. Asthma, COPD and Pulmonary Hypertension are among the commonest chronic respiratory diseases in Malaysia and the prevalence of the disease is on a rising trend.

5. Who should participate in the NChR?

All chest physicians in Malaysia who provide asthma, COPD and PH diagnostic services or who care for Asthma, COPD and PH patients such as public health practitioner, health care provider, health service planner and decision maker, researchers, and voluntarily report data to the NChR.

6. How is NChR organized?

The NChR is sponsored by the Ministry of Health and supported by several of its organizations:

- Institute of Respiratory Medicine
- Clinical Research Centre, Kuala Lumpur Hospital.

A Governance Board will be established to oversee the operations of the NChR. The MOH, Universities, professional bodies, NGOs and private healthcare providers will be present on this committee to ensure that the NChR stays focused on its objectives, continuing relevance and justification.

7. Who reports to the NChR?

The NChR receives data on with asthma, COPD and PH disease from 2 main sources:-

All chest physicians in Malaysia who provide asthma, COPD and PH diagnostic services or who care for asthma, COPD and PH patients such as public health practitioner, health care provider, health service planner and decision maker, researchers, and voluntarily report data to the NChR.

8. How can I participate in the NChR?

For the NChR to succeed, ideally all doctors who have anything to do with asthma, COPD and PH disease ought to report to the NChR. We urge you to do your part for your community, and help NChR obtain the information so crucial in promoting effective asthma, COPD and PH disease prevention and control.

9. What are the benefits of participating in NChR?

These are the benefit of being a participant in the registry:

- Access to the database and therefore study the trend of respiratory illness in Malaysia.
- Online data query and statistics of your institution anytime, anywhere.
- Online comparison of your institution data versus the country data anytime, anywhere.
- Data security and privacy are in compliance with regulatory requirement.
- Tap into a network of like-minded people from diverse professional disciplines and backgrounds.
- Invitation to all functions organized by the NChR.
- Free listing in the NChR web site.
- Acknowledgement in all publications of the NChR.
- Complimentary personal copy of all NChR publications.

10. What about confidentiality?

Current legislation allows doctors to release their patients’ data to persons demonstrating a need, which is essential to public health and safety. The NChR meets this requirement. The NChR has also developed strict policies and procedures to maintain confidentiality in disclosure of data.