When setting up a disease registry, there are several things to consider, such as choosing your registry type (for example, patient registry, natural history or clinical), engaging participants, and financing... read more →
Historically, research into rare diseases has been siloed and lacking in standardization. This has resulted in meaning overlaps, wasted time, and wasted resources, all of which delay potential breakthroughs for... read more →
When you invest in a patient registry, you want it to remain viable for many years and ensure that your data can contribute to research and treatment development. Here are... read more →
When exploring the idea of establishing a registry for your organization, the prospect can be daunting and the options, seemingly endless. There are a range of options available, costing from... read more →
With individual rare diseases affecting such a relatively small proportion of patients globally, capturing effective data to aid with research into treatments is incredibly important. Relying on data from clinical... read more →
The need for real-world evidence to inform therapies can no longer be denied. Gathering standardized feedback from patients where they live can give researchers richer details into the effectiveness of... read more →
https://www.youtube.com/watch?v=jRfPtBnur1s Building on the success of our most recent webinar on Patient-Reported Outcome Measures (PROMs), our August webinar will expand on the topic of PROMs, delving deeper into the realities... read more →
https://www.youtube.com/watch?v=Wg-Bx8H1-j4& Daniel Lewi (CATS Foundation), Ellen Haf Davies (Aparito), and Femida Gwadry-Sridhar (Pulse Infoframe) discuss their experiences using rare disease patient data to drive research forward. Streamed on 29 July... read more →
July 20, 2020 — Robert Iannone, Executive Vice President, Research and Development and Chief Medical Officer at Jazz Pharmaceuticals Narcolepsy is still a widely misunderstood and under diagnosed disorder. Sadly,... read more →
Melbourne, Australia, July 20, 2020: It is estimated half the Australian population will experience a mental health disorder during their lifetime and one in five of the population had experienced... read more →
