Like a hockey player to a gaping net, Nina Liu was drawn to the gap in important data that could... read more →
Narcolepsy is a sleep disorder whereby the body cannot properly regulate sleep and alertness. Common characteristics include excessive sleepiness, hallucinations,... read more →
At Pulse Infoframe, we have a sneaking suspicion about Dr. Femida Gwadry-Sridhar, our founder and CEO. We believe her favorite... read more →
To generate evidence, we need to understand the types of data that are important and available within the patient’s “real... read more →
When setting up a disease registry, there are several things to consider, such as choosing your registry type (for example,... read more →
Historically, research into rare diseases has been siloed and lacking in standardization. This has resulted in meaning overlaps, wasted time,... read more →
When you invest in a patient registry, you want it to remain viable for many years and ensure that your... read more →
When exploring the idea of establishing a registry for your organization, the prospect can be daunting and the options, seemingly... read more →
With individual rare diseases affecting such a relatively small proportion of patients globally, capturing effective data to aid with research... read more →
The need for real-world evidence to inform therapies can no longer be denied. Gathering standardized feedback from patients where they... read more →
