2 posts tagged “lori scanlon”

PatientsLikeMe and Sage Bionetworks launch open science study for people with Parkinson’s Disease

Posted February 5th, 2014 by

Companies Partner With TED Fellow Dr. Max Little to Map the Severity of the Disease

CAMBRIDGE, Mass.— February 5, 2014PatientsLikeMe and the nonprofit research organization Sage Bionetworks announced today the launch of a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD disease progression.

In collaboration with TED Fellow Dr. Max Little, the Patient Voice Analysis (PVA) project will for the first time combine­­­ data from two sources: phone-based voice recordings that Dr. Little’s software collects and analyzes to detect markers of PD; and information reported by patients using PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS), a tool that documents patients’ answers to questions that measure treatment effectiveness and disease progression.

Both sets of data will be analyzed by the PVA team composed of Dr. Little and scientists from PatientsLikeMe and Sage Bionetworks. In later phases of the project, the de-identified data sets will be available to the broader research community on Sage Bionetworks’ cloud-based computational research platform (www.synapse.org). By crowdsourcing the analysis, the PVA team hopes to identify relationships between voice markers (like tremors in speech) and clinical signs of Parkinson’s disease (such as tremors in the body) so that it becomes possible to monitor patients’ progression with a short phone call. Current monitoring efforts for PD typically require patients to undergo multiple lab visits that cost both time and money.

“We want to democratize the process of monitoring disease progression and return the results to patients as quickly as possible, so they are empowered to make the best decisions,” said PatientsLikeMe Vice President of Innovation Paul Wicks, Ph.D.. “We invite anyone who has PD to take part and join PatientsLikeMe, so they can stay informed about their condition and generate new insights about this disease,” said Wicks.

Dr. Stephen Friend, President and Founder of Sage Bionetworks, echoed Wicks’s enthusiasm for the collaboration. “We are so excited by this opportunity to work together with Dr. Little and PatientsLikeMe. If successful, I fully expect that Dr. Little’s voice software will be what PD patients and their families the world over use to monitor themselves in real-time, and thereby gain insights on how to better manage their own health.”

For more information on the Patient Voice Analysis Project visit: www.patientslikeme.com/join/pva

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Sage Bionetworks 

Sage Bionetworks (http://sagebase.org/) is a nonprofit biomedical research organization, founded in 2009, with a vision to promote innovations in personalized medicine by enabling a community-based approach to scientific inquiries and discoveries. In pursuit of this Mission, Sage Bionetworks is working with others to assemble an information Commons for biomedicine:

  1. That is supported by an open compute space (Synapse: www.synapse.org)
  2. That supports open research collaborations and innovative DREAM Challenges.
  3. That empowers citizens and patients with the tools they need to partner with researchers and share their data through Sage’s BRIDGE platform (http://sagebase.org/bridge/) to drive the research studies that matter most to them.

Sage Bionetworks is located on the campus of the Fred Hutchinson Cancer Research Center in Seattle, Washington, and is supported through a portfolio of philanthropic donations, competitive research grants, and commercial partnerships.

CONTACTS

Lori Scanlon
PatientsLikeMe
Office: +1 617.229.6643
Mobile: +1 774.217.1330
lscanlon@patientslikeme.com

Thea Norman
Sage Bionetworks
Office: +1 206.667.3092
Mobile:  +1 858.997.8598
thea.norman@sagebase.org


PatientsLikeMe at the Toronto ALS/MND Symposium

Posted December 7th, 2007 by

This year PatientsLikeMe was the major sponsor of the 18th International ALS/MND Symposium held in Toronto, Canada. Research scientist Paul Wicks, marketing officer Lori Scanlon, and community liaison Emma Willey were all in attendance to tell people about the site. We first started telling the ALS/MND community about us at the Yokohama conference in 2006, with Paul walking doctors and researchers through the site on a laptop. This year we decided to invest more in setting up an eye-catching booth which had people coming up to us to admire our space-age gadgets as much as to see the site!

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Over the course of 4 days we spoke to hundreds of conference delegates. Many doctors had said that they had been invited to join the site by their patients and were curious to find out more. We were able to use our new Google Mapping feature to show them where their local patients were, which had people queuing to see who they knew that was registered on the site! Several researchers were also interested in forming collaborations and we hope to be able to get our users involved in more research over the coming year.The most common questions people had for us were:

– Do people really want to know about their progress?: Our answer would be that PatientsLikeMe allows them the option to find out if they choose. Many professionals feel that it is their responsibility to protect patients and carers from distressing information. However, we believe that everyone’s information-seeking preferences are different and by giving people the choice we are empowering them.

– Don’t you get a lot of people pushing their products?: We have a few ways of preventing this. First there is our community of members, who are a very switched-on group. If anybody posts something suspicious or overtly commercial we normally hear about it in a matter of minutes and are able to respond appropriately. Secondly we have a clear emphasis on sharing what has been helpful, but we ask people not to try and persuade others to change their regime; that is a choice for them to make. Finally, by giving patients the tools to look at each other’s outcomes, we encourage people to put their data where their mouth is. If “supplement x” has worked wonders for them, we would encourage them to enter in their data so other people can see for themselves.

– What does this cost patients?: Nothing! Because our business model involves partnering with pharmaceutical companies to encourage their participation in disease communities, we don’t have to rely upon advertising, spam, or subscription fees to sustain our activities. We feel that being a neutral space from the perspective of industry and non-profits is best for everyone.

– Can we tell our patients about this?: Sure! We’d like nothing more. In the new year we’ll be distributing leaflets to all the ALS/MND clinics we can find so that they can invite patients and caregivers to join us.

On the penultimate day of the conference, one of our research team, Paul Wicks, gave a platform presentation describing PatientsLikeMe and presenting some of the research that’s been carried out on the site.

His talk was met with an enthusiastic response and was identified as a highlight of the symposium by several delegates. Click the video below to hear Paul take you through his eight minute presentation.

Dr. Paul Wicks

Without doubt, one of the most inspiring parts of any conference is meeting up with our users, and we were thrilled to see a few of them at the conference. We heard how PatientsLikeMe helped them understand more about their condition, meet other users in their area, and made them feel like they were a part of the fight against ALS/MND. Next year the conference is in Birmingham, UK, and we look forward to having lots of ground-breaking research to show off there!

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