Now that federal regulations call for reporting to clinical data registries, you might want to know more about them. If the terms on the internet are too confusing for you, let us explain the clinical data registry basics to you in the simplest possible way.
But before we do that, let’s start by explaining what exactly a clinical data registry is. Also known as a patient registry, a clinical data registry is a database that collects information about patients suffering from a particular disease or condition and the treatment they receive. Clinical data registries play an important role in improving healthcare.
Clinical Data Registry Basics
1. There are different types of clinical data registries
Clinical data registries could be used for different purposes, which is why they are so important in today’s day and age. You need information collected in clinical data registries for studying the etiology of a disease like Covid-19 to develop better treatments or to test whether a drug is effective in treating a certain condition.
It can also assess how a disease inflicts people from different demographics to create a better, more informed diagnosis and prevention plan. Clinical data registries include rare disease registries, which are about rare diseases affecting less than 200,000 people in the U.S.
2. Clinical data registries have multiple stakeholders
Clinical data registries can get funding from different stakeholders. But why would a stakeholder fund any registry? The answer is simple. Clinical data registries serve many different purposes; so naturally, multiple groups of people have an interest in them.
Clinical data registry stakeholders include:
- Medical researchers to understand the disease or condition better
- Doctors, physicians, and hospitals to provide better treatment to patients
- Pharmaceutical and Biotech companies to create effective drugs
- Government to improve the healthcare department
- Non-Profit Organizations that help those in need (like rare disease patients)
3. They Help Improve Healthcare
There is no contention here that clinical data registries help improve healthcare. Without proper data, it is close to impossible to understand what treatment is better, A or B, which drug is better, A or B, and which product produces fewer chances of long-term side effects. Hence, if given a chance, you shouldn’t hesitate to participate in a clinical data registry as it will help you and those around you.
4. Clinical Data Comes Directly from Patients
The primary source of patient-generated information is the patient themselves. This data is sourced directly from the patient, which maintains authenticity to a significant extent. Clinical data registries place stress on the patient and make sure all the findings center on patient encounters.
5. Clinical Data Registries Need Robust Software
Clinical data registries have replaced paper-based records, mitigating the chances of human error and misplacement. However, registration activity needs hardware and software and IT involvement, which many people don’t know. This is why a robust, easy-to-use, and understanding patient registry software solution can be of immense help. The right software system allows you the flexibility you need to add data in a safe and secure manner.