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.

This webinar was hosted in collaboration with Aparito and Pulse Infoframe.

With thanks to:

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Resource type

Webinar

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Duration

1 hour

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Last updated

July 2020

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Resource type

Webinar



Duration

1 hour



Date

July 2020

What will you learn in this webinar?

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, as well as:

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

Who is this webinar for?

This webinar is for patient groups who want to build their own rare disease datasets to drive research and make themselves a crucial partner to industry.