What is a patient registry?

A patient registry is an organized system that uses observational study methods to collect uniform data (clinical and others) to evaluate specified outcomes for a population defined by a particular disease or therapy, and that serves one or more predetermined scientific, clinical, or policy purposes. The resulting clinicaldatabase describes a file (or files) derived from the registry .
(Gliklich RE, Dreyer NA, eds. Registries for Evaluating Patient Outcomes: A User’s Guide. AHRQ Publication No. 07-EHC001-1. April 2007).

Who uses data from patient registries?

• Clinicians demanding more resources to better treat their patients
• Academic organization out to implement treatment guidelines
• Payer looking out for better value for their money
• Drug or device manufacturer to meet their pharmacovigilance obligations

Why are patient registries important in Malaysia?

Patient registries in Malaysia have 4 common objectives:
1. Describe the natural history of the target disease
2. Determine clinical and cost effectiveness of treatments for the target disease
3. Monitor safety and harm of products and services used in the treatment of target disease.
4. Evaluating access to and quality of treatment services for target disease.

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How is CRC involved in patient registries?

In working towards accomplishing our stated mission, which is “To improve patients’ outcomes through quality clinical research”, the CRC has an important role in promoting and supporting the establishment and operations of clinical databases and registries in this country.

In recent years, CRC has emerged to become the preferred collaborating partner for various clinical groups to establish clinical databases and/or registers in their disease or therapeutic areas.

Click here for databases supported by CRC

Drop by our office:

Patient Registries
Clinical Epidemiology Unit
Phone : 03 4044 3060/ 3070
Fax : 03 4044 3080
Email : This e-mail address is being protected from spambots. You need JavaScript enabled to view it


Location map


Clinical database and disease register are very similar and they serve important purposes for patient care, health service management, public health and of course research.

Click here to know more about clinical databases and disease registers

Patient Registers: 10 reasons why you need one