Patient registries have become increasingly important in today’s world, and today we provide an overview of patient registries – highlighting some key benefits a registry program can provide. Online, patient-focused registries are especially useful when it comes to better understanding the patient journey and progression of diseases, and effectiveness of various treatment modalities. Since patients know their condition best as they live with it every day, information coming directly from them can be extremely useful.
These registries provide high-quality data that researchers can use to decipher which treatment plan and medicines work best. This data can be used to bring about significant improvements in healthcare. When it comes to patient registries, there is no better tool than online web-based systems for data collection, storage and analysis.
What Do Patient Registries Do?
Patient registries are a collection of information for one or more purposes. They collect quality patient data that can then be used to bring about significant improvements in healthcare. Patient registries can help do the following:
- Monitor the course of a disease
- Bring about improvements in drugs and treatment plans
- Learn more about population behavior patterns of a particular disease or condition
- Develop research hypotheses
Challenges in Patient Registries
There is immense scope for patient registries. Stakeholders like pharmaceutical companies, healthcare experts, and drug researchers can all come together to provide a greater avenue for better patient treatment plans. Of course, this doesn’t mean that there aren’t challenges when it comes to patient registries. In fact, these challenges hold patient registries back from reaching their full potential.
Some areas of concern when it comes to patient registries include:
- How can stakeholders collaborate?
- How to increase patient participation?
- How to make the best use of data collection from patient registries?
Why Patients Participate in Registries?
The most pertinent aspect when it comes to patient registries is patient enrollment and patient participation. If you want to monitor any disease or condition using patient registry software, you can use as many data entries as needed. This helps to assess the course and progression of the disease over patients from different demographic and genetic backgrounds. This is precisely why data collection for rare diseases is so difficult. There is a low population of rare disease patients and gathering them for data collection may also be a challenge.
When it comes to participating in patient registries, patients have recently started being more cooperative in large part due to web-based in electronic patient reported outcomes (ePRO). You can even encourage patients to participate by making them aware of the issues holding them back. Patients reported that they would be far more willing to participate in registries if it helped with the following:
- Taking part in the registry program is easy
- Their participation would benefit others
- Their participation would benefit them
Patients want to be informed about how their input will translate into improving the quality of other patients in the future. These types of communication and assurances improve the willingness for patient to participate.
Patient Registry Software
Any overview of patient registries would be deficient if it did not speak to both the people and the software that powers such a program. A patient registry for a particular disease or condition can only be successful if it has the people and software solution that drives the program. Clinical Pursuit provides flexible patient registry software solutions that allow you to use the registry for your specific purpose. These registries can be adapted to any purpose, making them versatile. Click here to find out more about how Clinical PURSUIT can make your clinical registry program a success.