Frequently Asked Questions (FAQ)

1. What is a disease Registry?

2. What is the National Cancer Patient Registry (NCPR)?

3. What are the purpose of NCPR?

4. How Complete are National Cancer Patient Registry data?

5. Who should participate in NCPR?

6. How is NCPR organized?

7. What are the benefits of participating in the NCPR?

8. What about confidentiality?

9. How can I participate in the NCPR?

10. Can you remove my name and personal information from the NCPR?

11. How does cancer compare to other causes of death in Malaysia such as heart disease?

12. How common is cancer?

13. Which types of cancer are most common?

14. Who gets cancer?

15. What can I do to lower my risk of developing or dying from cancer?

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.

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2. What is the National Cancer Patient Registry (NCPR)?

The National Cancer Patient Registry (NCPR) is responsible for the collection of information regarding all newly diagnosed cases of cancer in Malaysia. Availability of local data will enable us to evaluate and compare the outcome of our patients. This will help to support our clinical decision making and local policy, improve access to treatment and improve the provision and delivery of oncology services in Malaysia. The National Cancer Patient Registry is proposed to provide a database for cancer patients who come for treatment in Malaysia. It will be a valuable tool to provide timely and robust data on the real world view of oncology practice, safety and cost effectiveness of treatment and most importantly the outcome of these patients.

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3. What are the purpose of NCPR?

	Describe the natural history of Cancers
	The registry shall describe the characteristics of patients with Cancers, its management, and patient survival and quality of life outcomes with and/or without treatment; and shall describe variation thereof across different groups, healthcare sectors or geographic regions, and its secular trend over time in Malaysia.
	Determine effectiveness of treatments for Cancer
	The registry shall determine clinical effectiveness and cost effectiveness of treatments of Cancer in real-world clinical practices in Malaysia.
	Monitor safety and harm of products and services used in the treatment of Cancers
	The registry shall serve as an active surveillance system for the occurrence of unexpected or harmful events for products and services.
	Evaluating access to and quality of treatment services for Cancers
	The registry shall assess differences between providers or patient populations based on  performance measures that compare treatments provided or outcomes achieved with “gold standards” (e.g., evidence-based guidelines) or comparative benchmarks for specific health outcomes (e.g., risk-adjusted survival rates). Such programs may be used to identify disparities in access to care, demonstrate opportunities for improvement, establish differentials for payment by third parties, or provide transparency through public reporting.

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4. How Complete are National Cancer Patient Registry data?

The cancer registrars and others who collect cancer data for the NCPR, all make a major effort to ensure that the data are as accurate and complete as possible. The level of completeness increases with time. As of December 2008, case reporting for diagnosis year 2008 was estimated to be more than 75% complete.

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5. Who should participate in NCPR?

Source Data Provider: All Oncologists and physicians in Malaysia who provide cancer disease diagnostic services or who care for cancer disease patients, and voluntarily report data to the NCPR.

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6. How is NCPR organized?

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

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7. What are the benefits of participating in the NCPR?

Apart from doing your bit for your community, here are some other benefits to being a reporter:

	Access to the database and to therefore study the trend of cancer disease 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
	Invitation to all functions organized by the NCPR
	Acknowledgement in all publications of the NCPR
	Complementary personal copy of all NCPR publications
	Tap into a network of like-minded people from diverse professional disciplines and backgrounds.

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8. What about confidentiality?

The NCPR has developed strict policies and procedures to maintain confidentiality in disclosure of data.

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9. How can I participate in the NCPR?

For the NCPR to succeed, ideally all doctors who have anything to do with Cancer disease ought to report to the NCPR. We urge you to do your bit for your community, and help NCPR obtain the information so crucial in promoting effective cancer disease prevention and control.

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10. Can you remove my name and personal information from the NCPR?

Yes, Patients are allowed to opt out of the registry. Patients have to consult their doctor.

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11. How does cancer compare to other causes of death in Malaysia such as heart disease?

Cancer is third commonest cause of death in Ministry of Health hospitals after Heart Diseases and Septicaemia. (2008 Health fact, Health Informatics centre Planning & Development Division, MOHs)

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12. How common is cancer?

Cancer is common, Every year, it is estimated that 30,000 will develops this disease in Malaysia.

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13. Which types of cancer are most common?

5 most common cancers in men are Colorectal, Lung, nasopharyngeal, Prostate and liver while for female are Breast, Colorectal, Cervix, Ovary and thyroid gland. (NCR 2006)

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14. Who gets cancer?

Both Sexes, all type of age group. The risk increases with age.

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	Develop a healthy life
	Don't smoke
	Eat fresh fruit and vegetables
	Eat fresh fruit and vegetables
	Cut down fat in diet
	Avoid or limit the amount of alcohol consume
	Exercise regularly
	Protect from the sun and avoid getting sunburned
	Women need to examine their breasts once a month, as well as get regular breast examinations, mammograms, and Pap smears
	Men should examine their testes regularly
	Ask your doctor for other specific recommendations e.g. screening, particularly if you have a family history of cancer.

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Other Questions?

If you would like any additional information regarding NCPR please contact the at ncpr@crc.gov.my 

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