Frequently Asked Questions (FAQ)
1. What is a disease registry?
Disease Registry
or surveillance is defined as an ongoing, systematic collection, analysis
and interpretation of disease specific data, and timely dissemination of
these consolidated and processed information essential to the planning,
implementation and evaluation of clinical and public health practice, to
contributors to the surveillance and other interested persons.
2. What is the National Orthopaedic Registry of Malaysia (NORM)?
The National Orthopaedic Registry of Malaysia (NORM) is a service supported by the Ministry of Health (MOH) to collect information about orthopaedic disease's patient in Malaysia. The information can be used to estimate the incidence of orthopaedic disease according to the types, to evaluate its risk factors and treatment in the country. Such information is useful for assisting the MOH, non-governmental organizations, private providers and industry in planning and evaluation, leading to orthopaedic disease prevention and control.
3. Why National Orthopaedic Registry of Malaysia (NORM)?
There are several important issues when applying the rigorous standards and protocols from clinical trials into real-life practice.
We should ask ourselves:
1. Are the population and the patients groups in Malaysia similar to those being investigated in the clinical trails?
2. Are our hospitals following the guidelines set out by the expert committees?
3. Are we seeing the same results and benefits of implementing evidence-based strategies?
4. Which strategy the best value in terms of cost-effectiveness for the Ministry?
Furthermore, much of what we understand about risk and likelihood of Orthopaedic disease and indeed its incidence and prevalence are derived from 'Western' data. There is now an increasing awareness of ethnic variations and risk, socio-cultural and socio-economic influences as well as geographical variations. The risk prediction of orthopaedic disease is also unclear and may be different in the patients.
4. What are the purpose of (NORM)?
The objectives of the NORM are to:
1. Determine the Diabetic Foot/Hand complications treatment outcome
2. Determine the Diabetic Foot/Hand care health educational and preventive program
3. Determine the number and the type of Hip Fractures among patients 50 years and above
4. Determine the treatment outcomes, and factors influencing outcomes of hip fracture surgery.
5. To create a tool for multi-centre research through website and thus stimulate and facilitate research on orthopaedic diseases and its management in all Orthopaedic Departments
6. Determine effectiveness of treatments for orthopaedic related diseases.
7. Monitor safety and harm of products and services used in the treatment of orthopaedic diseases.
8. Evaluating access to and quality of treatment services for orthopaedic diseases.
5. Who should participate in the NORM?
Source data producers: All Orthopaedic doctors and Specialist in Malaysia who provide Orthopaedic disease diagnostic services or who care for Orthopaedic patients such as public health practitioner, health care provider, health service planner and decision maker, researchers, and voluntarily report data to the NORM.
The NORM is sponsored by the Ministry of Health and supported by several of its organizations:
- Clinical Research Centre, Kuala Lumpur Hospital.
A Governance Board will be established to oversee the operations of the NORM. The MOH, Universities, professional bodies, NGOs and private healthcare providers will be present on this committee to ensure that the NORM stays focused on its objectives, continuing relevance and justification.
For the NORM to succeed, ideally all doctors who have anything to do with Orthopaedic disease ought to report to the NORM. We urge you to do your part for your community, and help NORM obtain the information so crucial in promoting effective orthopaedic disease prevention and control. The NORM receives data on orthopaedic disease from 2 main sources:
- All Orthopaedic doctors and specialists in Malaysia who provide orthopaedic disease diagnostic services or who care for orthopaedic disease patients, and voluntarily report data to the NORM.
8. How can I participate in the NORM?
For the NORM to succeed, ideally all doctors who have anything to do with orthopaedic disease ought to report to the NORM. We urge you to do your part for your community, and help NORM obtain the information so crucial in promoting effective orthopaedic disease prevention and control.
9. What are the benefits of participating in the NORM?
Apart from doing your bit for your community, here are some other benefits to being a reporter:
1. Access to the database and therefore study the trend of Orthopaedic disease in Malaysia.
2. Online data query and statistics of your institution anytime, anywhere.
3. Online comparison of your institution data versus the country data anytime, anywhere.
4. Data security and privacy are in compliance with regulatory requirement.
5. Invitation to all functions organized by the NORM.
6. Acknowledgement in all publications of the NORM.
7. Complementary personal copy of all NORM publications.
8. Free listing in the NORM's web site.
9. Tap into a network of like-minded people from diverse professional disciplines and backgrounds.
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 NORM meets this requirement. The NORM has also developed strict policies and procedures to maintain confidentiality in disclosure of data.
