Cancer registries are databases of cancer patients that contain very important information for clinical research in oncology. Normally these registries are designed to collect clinical data on specific tumors, with the aim of understanding the evolution of the disease and achieving the development of more effective treatments.
What is an electronic cancer registry?
Electronic cancer registries are very valuable for clinical research because they provide clinical data that allow a better understanding of the evolution of different types of cancer. They are also used to evaluate the efficacy of antineoplastic treatments.
For example, a registry of cancer patients allows to collect the date of the initial diagnosis and the date of when the metastasis occurs.
At the same time, the data from the start of a treatment and the date of tumor progression to this treatment allow calculating the progression-free survival of a patient to certain antitumor drugs.
On the other hand, cancer registries collect long-term follow-up dates of patients, recording the dates of death of these due to the tumor they suffer. This information is used to estimate the life expectancy of patients with certain malignancies.
What clinical data is usually collected in an electronic cancer registry?
Although each tumor registry is designed in a different way, depending on the type of cancer under investigation, the clinical data that are usually collected are the following:
- Medical history
- Diagnostic data (biopsy dates, molecular tests)
- Tumor status (localized, locally advanced, metastatic disease)
- Systemic treatments received (chemotherapies, targeted therapies)
- Surgeries and radiotherapies received
- Radiological responses to the different treatments (stabilization, partial response, complete response, progression)
- Dates of tumor progression
- Dates of death
How are cancer registries used to assess treatment efficacy?
Electronic cancer registries collect information on the efficacy of treatments. In oncology, the effectiveness of a treatment is mainly measured by the following parameters:
- Progression-free survival: It is defined as the survival period in months from the start of a treatment until tumor progression occurs (usually measured with the RECIST criterion).
- Radiological response: It is the evaluation of how a tumor responds to a treatment, from a radiological perspective. When receiving treatment, a tumor may remain the same (stabilization), it may have shrunk considerably (partial response), it may have disappeared completely (complete response), or it may have worsened (progression). Radiological response is usually measured using the RECIST criteria.
- Overall survival: It is defined as the survival period in months from the start of a treatment to the date of death of the patient, due to the tumor or another cause.
Why are cancer registries important for translational research?
Cancer registries contain clinical data that are very important when correlated with biological or molecular information from patients. Research that attempts to correlate clinical outcomes with molecular findings is known as “translational research.” The “translational” concept is based on the idea of transferring the results obtained in the basic research laboratory, so that they have an impact on clinical practice.
For example, in oncology, clinical data from patients (efficacy data such as radiological response and survival) may be correlated with molecular data obtained from tumor and blood samples. The intention is to identify predictive biomarkers (for example, overexpression of a protein) that are associated with good survival outcomes. This type of research allows to predict that some patients with certain biological or genetic characteristics may benefit more from certain drugs.
Why are cancer registries important for personalized medicine?
The clinical data contained in tumor registries is also highly relevant for personalized medicine. Based on translational research, being able to correlate the biological characteristics of patients with clinical results allows the development of more personalized treatments. In other words, the objective is to develop more effective therapies based on the characteristics of each patient.
What technological tools are there to implement a cancer registry?
One of the fundamental elements for the success of a cancer registry is having a robust technological tool to implement it.
Tumor registries are typically constructed using a web-based software platform called an electronic case report form (eCRF). Basically, this platform is a web application that allows research staff located in hospitals to enter data in a common electronic record, making the data immediately available to the team that carries out the analysis.
There are many tools for implementing web-based tumor registries, some more sophisticated and expensive than others. The sponsors of tumor registry studies must assess which applications are the most suitable for the particularities of their study. For example, an international registry study with thousands of patients is not the same as a small regional study that will include fewer than 100 patients.
What basic requirements should be met by web applications used to implement cancer registries?
When selecting a cancer registry software, study sponsors must ensure that the application they are going to use meets these essential requirements:
- Access control: The platform must have an access control module that monitors the users who connect to the system. This module must generate a historical record of the users who have accessed the platform.
- Traceability: User activity within the platform must be recorded in a traceable log. This log must record what values have been entered in each of the fields of the forms, including the modifications of these values.
- Backups: Every patient registry system should have a reliable backup mechanism, in order to restore data in the event of a serious technical incident.
What cancer registry solution does Zlynger offer?
Zlynger is a company specialized in providing web applications for the implementation of cancer registries. Our patient registry software is used to carry out observational studies in oncology, complying with all the quality and safety standards required by the clinical research sector.