1. What is a patient 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 the NNeuR?
The NNeuR is an organized system that uses multi-centres observational study methods to collect uniform data (clinical and others) for stroke and epilepsy patients. This patient registry is dedicated to evaluate specified outcomes for a population and that serves one or more predetermined scientific, clinical or policy purposes which relevant to stroke and epilepsy in Malaysia.
3. Who should participate in the NNeuR?
All neurologists in Malaysia who provide stroke and epilepsy diagnostic services or who care for stroke and epilepsy such as public health practitioner, health care provider, health service planner, researchers and voluntarily report data to the NNeuR.
4. How is the NNeuR funded?
NNeuR is funded by grants from the MOH and supported by the CRC.
5. Why do we need the NNeuR in Malaysia?
Lack of Malaysian data is also hampering evidence-based efforts to improve patient care, access to treatment, and to inform and plan healthcare policy. Hence, the National Neurology Registry will establish to continuously and systematically collect data on stroke and epilepsy patients in Malaysia. This patient registry will assist healthcare professionals or clinicians in evaluating the specified treatment and outcomes, examining factors that influence prognosis and quality of life, and describing disease patterns which relevant to stroke and epilepsy in Malaysia.
6. How can I participate in the NNeuR?
Ideally all doctors who have anything to do with stroke and epilepsy ought to report to the NNeuR. We urge you to do your part for your community, and help NNeuR obtain the information so crucial in promoting effective stroke and epilepsy. This is a new project, which has only recently obtained funding support. As a result, much of the information in the database is still preliminary or incomplete. You can help with this. If you are aware of missing trials, changes in trial status, errors or omissions, please let us know. To add a new listing, please complete our online data entry form.
7. What about confidentiality?
All clinical sites agree that all information communicated to him/her is the exclusive property of sponsor, and ensure that the site will keep the same strictly confidential or any person connected with the work and shall not be disclosed to any third party without the prior written consent of sponsor.