Building your patient group data to drive research
Data is increasingly at the forefront of science and medical research. The development of new drugs requires an in depth understanding of not only the science of a disease, but also its impact on patients.
This is of even greater importance in the world of rare diseases where both research and patients are scarce. Patient groups occupy an important niche, as they understand the patient experience of disease and coordinate any existing research effort.
Hosted in collaboration with Aparito and Pulse Infoframe, this webinar examines the ways in which patient groups are able to build their own rare disease datasets to drive research and make themselves a crucial partner to industry. We explore some of the new technologies and opportunities that are available to put these patient community datasets at the forefront of cutting-edge research.
What will you learn in this webinar?
- The value of collecting data as a patient group
- How data collection can drive change in your rare disease
- The types of data you can collect and how it can be collected
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