Oct
29
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 three key questions to consider that will help you secure the future of your investment, your patients, and your registry....
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Oct
13
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 next to nothing up to millions of dollars, with each having pros and cons, making deciding which option to choose...
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Oct
05
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 trials alone is no longer sufficient to ensure safety, efficacy, and discovery of biomarkers for new drug development. Increasingly regulators...
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Sep
01
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 treatments. However, sharing real-world experience with researchers and the general public is also the foundation of patient advocacy. We spoke with Alan...
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Aug
05
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 of implementation. Featuring Dr Femida Gwadry-Sridhar, a pharmacist, epidemiologist, methodologist and founder of medical technology company Pulse Infoframe, Julien Wiggins,...
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Aug
05
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 2020.
Jul
20
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, in children and adolescents, narcolepsy can often be mistaken for laziness or lack of motivation. This means many children living...
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Jul
17
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 a common mental disorder in the previous 12 months, according to a study conducted by the Australian Institute of Health...
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Jul
06
https://www.youtube.com/watch?v=EKgieiPGnG0 Patient registries—Does your population need one?
Jun
27
https://www.youtube.com/watch?v=I8SbtXpktH8 Learn about the CDKL5 Registry, International CDKL5 Disorder Database, & Connect CDKL5, and how they complement research goals. Q&A Panel will follow. Panel: Dan Lavery (Loulou Foundation), Helen Leonard (Telethon Kids), Amanda Jaksha (IFCR), Antonino Caridi (CDKL5 Alliance), & Femida Gwadry-Sridhar (Pulse Infoframe)
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