Xperiome Platform Aims to Streamline Searches for Rare Diseases - Prader-Willi News

Xperiome Platform Aims to Streamline Searches for Rare Diseases - Prader-Willi News


Xperiome Platform Aims to Streamline Searches for Rare Diseases - Prader-Willi News

Posted: 25 Aug 2020 05:00 AM PDT

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research.

The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the London-based company said.

Xperiome works by using machine learning — a method of data analysis — and behavioral science to collect real-world experiences from patients that may then help scientists and companies reach their goals of patient involvement.

With an online community of more than 11,000 patients and caregivers, Xperiome connects those living with a wide variety of rare diseases, which are defined as disorders affecting less than 200,000 people in the U.S. The European Union defines a disease or condition as rare if it affects fewer than 1 in 2,000 people within the general population.

Examples within Xperiome's network include cystic fibrosis, myasthenia gravis, sickle cell disease, hemophilia, and idiopathic pulmonary fibrosis.

The shared guidance from this community can be leveraged to help pharmaceutical companies find and retain hard-to-reach patients, and to monitor the effectiveness of new therapies in real-world settings. Such real-world knowledge is unavailable elsewhere, Raremark says on its website.

In addition, pharmaceutical companies may use Xperiome's platform throughout clinical development and commercialization to connect with the right patients at the right time, and to complete datasets. Overall, Raremark sees patient experiences — as gathered through this digital platform — as a key to improving the search for therapies for all rare diseases.

"The missing puzzle piece is often the patient perspective, especially in rare disease, where patients are so much harder to find," Alex Garner, the company's chief operations officer, said in a press release.

"The Xperiome platform enables pharmaceutical companies and contract research organizations to connect with these hard-to-reach communities and uncover key insights that make the drug development process smarter," Garner said.

Raremark currently supports longitudinal studies via Xperiome to collect long-term data. Examples of active and completed studies, in which participants are asked about their experiences with certain medications, are available here. The company welcomes requests at [email protected] to include disorders not currently listed.

To further give voice to people in the rare disease community, Raremark hosts the podcast Raremark Voices, in which patients, family members, and healthcare professionals tell their stories.

The company's founder, Julie Walters, has been featured on the podcast Talking Precision Medicine, hosted by Genialis. Walters has a degree in molecular genetics and a background in popular journalism. She was named a Female Entrepreneur of the Year at the UK's 2017 Enterprise Awards.

Earlier this year, Raremark partnered with TriNetX, to help connect rare disease patients with applicable clinical trials.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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José holds a PhD in Neuroscience from Universidade of Porto, in Portugal. He has also studied Biochemistry at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario in London, Ontario, Canada. His work has ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer's disease.

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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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Everything you need to know about the John Lewis online Christmas Shop - Countryliving (UK)

Posted: 25 Aug 2020 02:31 AM PDT

John Lewis & Partners has opened its online Christmas Shop four months before Christmas Day and 10 days earlier than last year for the first time ever.

The British retailer made the decision to bring forward the opening date following a high level of customer searches on its website for Christmas products — which, so far, is already up 370% on last year.

Some of the most popular searches include Christmas trees, baubles, cards, lights and wrapping paper.

"Christmas always provides a reason for celebration and a welcome break. Understandably it looks as if people are looking forward to and planning for it earlier than ever this year," Jason Billings-Cray, Partner and Christmas Buyer at John Lewis & Partners, says.

"Christmas celebrations mostly take place in our homes and we have seen how the lockdown has made people think more about their homes, so perhaps we shouldn't be surprised that people are already thinking about how they will decorate their homes this Christmas."

Some of the key themes for Christmas this year include Art Nouveau, Pop art, Renaissance and Bloomsbury. As well as fun festive colours, this year also sees the collections tap into the beauty of the outdoors — something which many of us embraced during the pandemic.

John Lewis & Partners

John Lewis & Partners Post Impressionism Toucan and Leaf Bauble, Multi

John Lewis & Partners johnlewis.com

£6.00

Jason adds: "During lockdown many people have spent more time outdoors and become closer to nature. From the hundreds of emails from customers asking to be alerted when specific decorations become available it looks as if animal baubles will be the most popular this year with peacocks, squirrels and toucans topping the list of most wanted."

Customers aren't only searching for trees and decorations, either. Searches for Christmas puddings on Waitrose is up by 75% on last year, while mince pies and mincemeat are up 100% and 400%, respectively.

The John Lewis website will have the full range of Christmas products by Sunday 30th August. All Christmas products will be available in John Lewis shops across the UK from Friday 25th September.

SHOP THE CHRISTMAS RANGE

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