About NCPR

Introduction

National Cancer Patient Registry (NCPR): A patient registry (Clinical database) is to evaluate health outcomes of patients undergoing treatment for cancers 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.

Objectives

The objectives of the registry are as follows:

	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 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 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.

Patients with cancers from participating clinical sites who meet eligibility criteria will be enrolled into the registry. Patient inclusion criterion is deliberately broad and shall include any patient with a confirmed diagnosis of cancer.

There is no prescribed study visits. Patient shall attend the clinical site as and when required per the standard of care at the site. Required data shall be collected as they become available.

Patient study population and Clinical sites

The registry study population consists of patients with cancers to be recruited from participating sites in Malaysia. All new patients with cancers undergoing treatment at a participating clinical site are eligible for entry into the registry. Patients cannot be withdrawn from the registry. Patients have the right to object disclosure of their information as stated in the public notice on information on patient confidentiality. However, a subject may be lost to follow-up. In that case, the registry coordinating centre must be informed. Participating sites must attempt to re-establish contact with subjects by telephone, correspondence or home visit and thus to resume follow-up of patient. The site shall complete the Outcome Notification page of the CRF for a patient who is lost to follow-up and attempts at re-establishing contact have failed.

Benefits of being a participant of the NCPR

	Data security, privacy and confidentiality are in compliance with regulatory requirement
	Invitation to all function organized by the NCPR
	Acknowledgement in all publications of the NCPR
	Complementary personal copy of all NCPR publications
	Free listing in the National Cancer Patient Registry’s web site
	Tap into a network of like-minded people from diverse professional disciplines and backgrounds