The companies and hospitals unite their skills and knowledge for the research of retinitis pigmentosa, a group of genetic eye disorders.

The purpose of the collaboration is to examine treatments of retinitis pigmentosa by making use of IQVIA sales data and clinical data collected in the BCB retinal registry.

“Retinitis pigmentosa is treated by injecting medicine directly into the patient’s eye. According to the treatment process, a physician examines the patient and makes the injection treatment plan, and a nurse or a doctor gives the injection and enters the information about the medicine and the injections into BCB Medical’s register,” says Aaro Mustonen, the Real-World Data Manager, Scientific Medical Content and Project Management at BCB Medical.

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The data in the BCB Medical register is combined with the IQVIA data to allow the monitoring of the sales volumes in relation to the treatment received by the patients, and of the effectiveness of the treatment. Thanks to privacy-enhancing technologies and safeguards, patient data is aggregated to protect individual privacy, the company states.

“Physicians who have been involved in the development process have already benefited from the combined dataset of sales volumes and injections. When comparing between different hospitals or even between different countries, we can see that the treatment habits differ significantly,” says Mustonen.

Combined data

Thanks to this collaboration, physicians and clinics are provided with crucial data that can help improve the quality and effectiveness of care, all the while supporting the pharmaceutical companies by offering them collaboration opportunities and research data.

“Combined data can be used to show the patient what it means when they have such a disorder as retinitis pigmentosa and how it usually progresses”, says Jukka Moilanen, Director of the HUS Eye Clinic, which has been utilizing BCB’s retinal register since 2015. “Decision-making in patient care is based on international research and real-world data. With this existing new collaboration, we also get a view of our own real-world data. With the help of cumulative reporting, we have the opportunity to easily and quickly monitor and examine our own data and compare it with the data of other units.”

The first step

According to Mustonen, the research of retinitis pigmentosa can be just a first step in the collaboration.

”We aim to create opportunities for joint research projects with the pharmaceutical industry and physicians. Projects like this increase understanding of the markets and of the patients’ care, benefiting all parties,” Mustonen says.

The initial dashboard solution created by BCB Medical and IQVIA Finland for retinitis pigmentosa is also an excellent tool for monitoring the real-world utilization of new pharmaceutical products, they state.

“When there is not yet experience or real-world data on the use of a new medication, our solution can be used for quality control and for studying the effectiveness of the medication. Our primary goal is to create a win-win situation for everyone involved and to offer the patients the best possible medicine. For patients with retinitis pigmentosa, this means finding ways to slow the progression of the loss of vision. In the future, the project can be expanded to other diseases and treatments,” Mustonen concludes.

Photo: BCB Medical