12 posts tagged “voice”

Update and results – the Patient Voice Analysis study

Posted April 27th, 2015 by

About a year ago, the PatientsLikeMe Parkinson’s disease (PD) community started something totally different: a study to compare the sound of their voices to their self-reported PD Rating Scale (PDRS) on PatientsLikeMe. It’s called the Patient Voice Analysis (PVA), and we teamed up with you, Max Little, Ph.D. and Sage Bionetworks to get it done.

A little bit of background
Dr. Little had done some earlier work and compared the voice signals of people who were living with PD to those of people who were not, but we wanted to take that to the next level. With their PDRS, they shared how Parkinson’s was affecting them, and we were able to match their self-reported scores to the sound of their voice.

By matching a PDRS to voice samples, we might develop the ability to predict PDRS scores (which takes a few minutes to complete) by using the voice test (which only takes a few seconds). We might also be able to detect more subtle changes in people’s Parkinson’s through their voice than we can through the PDRS. This is what Dr. Little is working toward, and all the voice samples you donated will help make it happen.

Community results, starting with the basics
Who took part, from where, and how many PDRS scores could we match to voice recordings?

  • Most of the recordings came from the U.S. (81%), with others coming from the U.K. (12%), Canada (5%) and some from Australia and New Zealand, too.
  • 677 of you recorded 851 voice samples
    • Since our original goal was 500 samples, you blew that out of the water!
  • 114 of you took the test two or more times, and one community member even contributed 10 recordings!
    • For those that took part more than once, we can start to examine how your symptoms changed over time.

Why voice recording quality matters
For the PVA study, you were able to use your landlines, cell phones, even Skype or Voice-Over-Internet-Protocol (VoIP) to submit your voice samples. The recording quality varies depending on which type of call you used, occasionally creating technical issues in analyzing the voice samples.

For example, if you’re using a cell phone in a busy restaurant, your microphone will automatically get louder so that the person you’re talking to can hear your voice better and without distortion. But that also changes the loudness of the background noise. In this study, that automatic change could actually affect the quality of the voice recording, so we have to identify where this has been an issue and find ways to overcome it.

Partly because of this, we’re still analyzing the voice samples in detail. We’re looking for subtle markers of Parkinson’s, such as fluctuations in volume, pitch and breathiness. We’re also training intelligent algorithms to identify when the quality of the voice recording is strong enough so we can develop a consistent and repeatable process.

You be the researcher
To give you some idea of what we are looking for in these voice recordings, we wanted to share a couple with you. The first is someone living with severe Parkinson’s, who scores 55 on the PDRS. You can probably hear the noticeable tremor in pitch, and the occasional short breaks in voicing.

The second is a recording of someone with mild Parkinson’s, who has a very low PDRS score of 1.

Can you hear the subtle drift in pitch? This is, most likely, indistinguishable from normal pitch drift. Subtle pitch variations such as this are one of the kinds of symptoms that algorithms attempt to identify from these voice recordings, and they contribute towards making the PDRS prediction.

So, what’s next?
At this stage, the PVA project is still just a research tool and isn’t quite ready for clinical or diagnostic use. We’re still working on analyzing the data to compare the severity of voice patterns to the reported severity of Parkinson’s disease. But in the meantime, if you’re looking to share more info with your doctor, the most useful tool is your PDRS score on your PatientsLikeMe profile. It contains items that make sense to a neurologist. If your clinic has access to speech and language pathologists, they would also have the ability to map any vocal issues you may be experiencing as part of your Parkinson’s.

As we continue to evolve the tools, we hope to provide individual level feedback and information for clinicians. But before that can happen, we want to make sure that the data quality is high enough to support drawing clinical conclusions.

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PatientsLikeMe members to be highlighted in patient empowerment webinar

Posted January 13th, 2015 by

Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar.

On Tuesday, January 20th, at 2:00pm EST, the Partnership to Improve Patient Care (PIPC) is hosting their first “Patient Empowerment Webinar,” an online event focusing on the importance of patient engagement in their own healthcare and in health policy. Two PatientsLikeMe members, Ms. Laura Roix and Ms. Letitia Brown-James, will be participating in the discussion, and their experiences will be a part of the webinar. Here’s a little bit about Laura and Letitia, and more ways they’re already empowering others:

Laura is a member of the idiopathic pulmonary fibrosis (IPF) community on PatientsLikeMe, and she recently traveled to Maryland to speak at the Food and Drug Administration’s (FDA) Patient-Focused Drug Development Public Meeting on IPF.  Laura went with our very own Sally Okun RN, VP of Advocacy, Policy and Patient Safety and spoke about her journey and what it’s like to live with IPF. (She recapped her experiences in an October blog interview.) But that’s not all Laura shares – she’s a 3-star member on PatientsLikeMe, which means she is a super health data donor and always keeps her information up to date so others can learn from her.

Letitia has been living with epilepsy since she was little, but after connecting with the PatientsLikeMe epilepsy community she learned about new treatment options available to her, like surgery. She shared about her experiences in a video, and after receiving her surgery, she’s been living seizure-free for years. Letitia is also a part of the first-ever PatientsLikeMe Team of Advisors, a patient-only panel that gives feedback on research initiatives and creates new standards to help all researchers understand how to better engage patients.

The PIPC webinar is open to everyone, so if you’d like to join, please RSVP to the event coordinator via email. Hope to see you there!

Share this post on Twitter and help spread the word for IPF, epilepsy and patient-centered healthcare.


The Patient Voice- MS member Jackie shares her story

Posted January 12th, 2015 by

 

When Jackie was diagnosed with multiple sclerosis after a long, exhausting process, she struggled with a fear of the unknown and had no idea what she would be facing. But then she connected with the thousands of MS members on PatientsLikeMe. Jackie shared with the community about how she felt her current medication was making matters worse instead of better, and others responded with how they had the same experience. They told her about a new medication that seemed to be working for some of them. Jackie’s doctor prescribed it after she mentioned what others had shared, and she’s been having good luck with it ever since. Watch the video to see more of her journey.

 

 

Share this post on Twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.


Open funding for open science to accelerate ALS research: An interview with Prize4Life CEO Shay Rishoni

Posted January 6th, 2015 by

Just about a year ago, we teamed up with Sage Bionetworks and TED Fellow Dr. Max Little for an ongoing Parkinson’s disease (PD) project called the Patient Voice Analysis (PVA).

 

The big idea: combine data from two sources – phone-based voice recordings and patient reported data from PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS). Then, make the de-identified data sets available to the broader research community on Sage Bionetworks’ cloud-based computational research platform (http://www.synapse.org) to develop new tools to track PD disease progression.

We were overwhelmed by the response from the PatientsLikeMe PD community. More than 650 members provided 851 voice samples, and 779 of those were matched to the PDRS symptom data entered.

 

What’s next for open science?

Sage Bionetworks is working with the distributed DREAM community and ALS non-profit Prize4Life on another open science challenge alongside called the ALS Stratification DREAM Challenge. How does it all fit together?

The “Fund the Prize” campaign is the first of its kind effort to make the path for accelerating drug development completely open – the patient data is open access, the research is open, global and collaborative, and the funding is crowd-based.

The ALS Stratification Challenge, opening in Spring 2015, will be a worldwide cloud-based competition designed to spur the development of quantitative solutions that can identify which ALS patients’ disease will progress rapidly and which will progress more slowly. Prize4Life provides the largest ALS clinical trials database in the world. Sage Bionetworks and DREAM have created a synergistic competition concept and cloud-based computing platform that includes forums, webinars and a “leaderboard” that shows whose model is working best.

The individual or team with the best solution wins the prize – a $37,000 donation that the Challenge is asking everyone to help raise through the INDIEGOGO “Fund The Prize” campaign. The prize will help incentivize innovators from around the world to take part, and 100% of every donation goes towards the prize.

Helping spread the word

Prize4Life CEO Shay Rishoni is a 48 year-old dad of two boys and was an Ironman triathlete before being diagnosed with ALS in August 2011. Within three months he saw his ability to use his arms weaken considerably while no other body parts were affected. Less than two years later he was completely paralyzed and breathing with a ventilator. We caught up with him to help spread the word and learn more about the Challenge, why he thinks the prize is so important and why he works so hard.

Can you tell us a little about your own journey with ALS?

I was diagnosed with ALS 3.5 years ago, when I was 45 years old, a CEO of a company, an Ironman, a pilot, a military colonel (in res.) and a family man with two young sons. Given all of that, receiving a diagnosis of ALS was of course not what I had planned! But I knew that like everything else in life, I will make sure to stay true to myself and my values nonetheless- to stay positive, active and entrepreneurial. That meant in my public life to fight for the development of treatments- and a cure!- for ALS, for current patients like me, but mostly for future patients. In my private life, as a husband, as a friend and as a father to fight to feel and know that Life is Good, and winning is a way of life. Although by now I am fully paralyzed, I believe that as long as I dream up plans and then work to make them happen, I am invincible.

You can see more of me explaining it in this video of my TED talk.

How did you become involved with Prize4Life and the ALS Stratification Dream Challenge?

I first learned about Prize4Life from its founder, Avi Kremer, who is also an ALS patient. Avi was diagnosed with ALS 10 years ago, as a 29 years old Harvard Business school student striving to make finding a cure for ALS a viable business. He was the recipient of the 2011 Israeli Prime minister award for innovation and entrepreneurship in the non-profit sector. I was inspired by his strength, courage and sophistication, and with Prize4Life model and important work and I knew that this is a framework with which I will do important meaningful things for ALS research, and I become the CEO in 2013.

One such important thing is the ALS Stratification Dream challenge. I think it’s a unique and highly innovative initiative. From a patient perspective it addresses a critical question- How can patients with a rare disease create meaningful solutions for their own illness? And the answer is by engaging as many stakeholders as possible. The “Fund the Prize” campaign is the first of its kind effort to make the path for accelerating drug development completely open- the patient data is open access, the research is open, global and collaborative, and the funding is crowd-based. It builds on Prize4Life’s database of ALS patients- the largest ALS clinical trials database in the world. Sage Bionetworks and DREAM, our collaborators, have created a synergistic competition concept and cloud-based computing platform to allow a planetary republic to use the data. Together we will get computational solutions that will tell us why patients are so diverse- from Lou Gehrig’s succumbing to the disease within two years to Stephen Hawking’s 50 years odyssey with ALS. The Challenge, opening in Spring, 2015, will be a worldwide cloud-based competition designed to spur the development of computer algorithms that effectively predict which ALS patients will experience rapid disease progression and which patients will live longer.

Why do you think the prize model is so important?

Prize4Life’s prize model is inspired by similar programs such as X-prize for space travel, demonstrated to foster meaningful research. These programs allow bringing awareness and new minds into a field and generate measurable results for well-defined goals. Prize4Life wants to bring all these benefits to ALS- awareness, new minds and measurable, highly needed, results.

Prize4Life aspires to span broad fields of innovation for their importance for ALS: we gave a $1M prize for a medical device that serves as a biomarker for ALS, another prize for developing algorithms that can predict disease progression and we are running a prize for a druggable cure. We believe that biologists, chemists, engineers, clinicians, software developers and all citizen scientists can bring a meaningful change in ALS.

Prize4Life and DREAM have already demonstrated the power of open Challenges to advance ALS disease research. The first ALS Challenge, conducted in 2012 when Prize4Life’s open ALS patient database contained data from about 1,000 patients, leveraged insights from over 1,000 solvers from 63 countries to identify novel methods that have the potential to reduce the costs of ALS drug development by millions of dollars. The winning approaches are now being used in the development of several ALS treatments, and are described in a recent article in Nature Biotechnology (here is coverage by Science news).

Why do you work so hard?

Because I have a lot to accomplish. (“If not me than who? If not now than when?”) ALS is still an orphan disease, still is relatively unknown, and we still see tremendous potential to realize- computer scientists can create solutions for better treatments and care, engineers can create better assistive technology, biologists can create better drugs… I believe everyone can be part of the victory over ALS.

What’s one thing about ALS that you think everyone should know?

That we, the ALS patients, even when we can no longer speak, still have a voice. That we still have big dreams and still work to make them happen, and if enough people will work together, we will win the fight over ALS.

…and that ALS patients can love and be loved.

How do you see open science evolving in the future?

I think open science will only become more important in fostering innovative research ideas from diverse communities. It will allow everyone to be part of the solutions, and that means many more solutions!

Where can someone make a donation to help fund the prize?

“Fund the Prize- Solving ALS Together” is a crowdfunding campaign (running now on Indiegogo.com) and intended to provide the prize money for the Challenge and thereby to bring together renowned scientists worldwide and drive innovation. The crowdfunding will run until January 22, 2015.

Share this post on Twitter and help spread the word for Fund the Prize and ALS.


2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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The Patient Voice: Garth shares his cancer story for 24 Days of Giving

Posted December 12th, 2014 by

After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.

“In the beginning they never had a deep meaning. They were generally just notes of reminders. ‘I love you’ or ‘Have a good day.’ The notes took on a little different of a meaning after I was diagnosed with cancer. I recognized that I was looking at my legacy.”

Garth’s napkins are his personal legacy, but he also has a medical legacy – the health data he donates on PatientsLikeMe. This month, join Garth in 24 Days of Giving, a campaign centered around patients, driving medicine forward and making good things happen, together. Every piece of health data that is shared will contribute towards a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

If you’re already a member, add your data to 24 Days of Giving. If not, join PatientsLikeMe and see how your data can make a difference.

Share this post on Twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.


The Patient Voice- Epilepsy member Letitia shares her story

Posted September 25th, 2014 by

 

 

What would you do if you were living with seizures from epilepsy since you were ten years old? And you weren’t even able to drive a car? Letitia turned others living with epilepsy on PatientsLikeMe and shared about her journey in a recent video. Watch above to see her inspiring story, and how she’s helping others through her own experiences and the data she’s donating on PatientsLikeMe.

 

 

Share this post on twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.


Results! PatientsLikeMe diabetes members share about challenges and concerns

Posted August 25th, 2014 by

Earlier this year, more than 450 PatientsLikeMe members from the type 1 and type 2 diabetes communities took part in a new survey from our partners at Kaiser Permanente Colorado’s Institute of Health Research. (Thank you all for adding your voices!) Members shared about everything from the day-to-day challenges of living with diabetes to the difficulties of communicating with their doctors.

 

This is real-world, patient reported health data doing good; helping others living with diabetes learn more from people just like them and showing researchers where to focus their efforts in the future. Click here to view the results.

Share this post on twitter and help spread the word for diabetes.

 

 


If you could share one thing… -Steven’s inspiring answer

Posted June 16th, 2014 by

PatientsLikeMe ALS member Steven (sheronemus) was diagnosed with ALS back in 2005, and we recently had the chance to ask a few questions about his experiences. Steven spoke about his initial anger and disbelief, the clarity and focus he developed afterwards and how technology helps him participate in many events he didn’t expect to witness. Read his full interview below.

What was the first thing that went through your mind when you were diagnosed with ALS?

After the initial shock came a phase of denial and anger. Like many people with ALS, I had seen a number of doctors over a period of two years and had received several diagnoses ranging from a pinched nerve to benign fasciculation syndrome. Feeding the disbelief was my anger at the neurologist who, after performing a minimum of tests, told me I was dying and to come back when I needed a wheelchair. Since he was a jerk he couldn’t be right, right? Soon my wife and I felt a profound loss for our 4 children and for all the milestones we wouldn’t share like graduations, weddings and grandchildren.

How did your diagnosis change your everyday life?

My diagnosis brought clarity and focus as the realization set in that wallowing in fear gave ALS a victory it didn’t deserve. I am living, not dying, and we live as normally as we can while being proactive about planning for my future needs.

Looks like you’re very active on PatientsLikeMe – what tools do you use the most, and what have you learned about your condition?

I really love tracking my condition and I use the charts to help keep friends and family updated on how I’m doing. The most important thing I have learned is how different and intensely personal everyone’s journey is. Just because something works for me doesn’t mean it is right for others. The forum allows us to share experiences and build supportive relationships.

We see your daughter just got married last autumn – congrats! How did technology help you participate in the wedding?

The wedding of our oldest daughter was one of milestones I didn’t expect to witness. It was a beautiful day. The most obvious technology I used was my standing powerchair that allowed me to “walk” my daughter down the aisle and dance with her. Equally important, though, were my VPAP, Diaphragm Pacing System and PEG feeding tube, all combining to give me the strength to participate, not simply observe. We’ve also recently been blessed with our first grandchild, a girl, whom I talk to with my new eyegaze communication device.

If you could share one thing with the greater ALS community, what would it be?

Don’t let fear for the future ruin the beauty and gift of today.


The Patient Voice- Parkinson’s member Ed shares his story

Posted April 21st, 2014 by

 

Back in March, we shared some of our infographics and videos on the blog, and as part of our #dataforgood initiative, PatientsLikeMe member Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort. Click above to watch his video, and keep an eye out for more interviews with PatientsLikeMe members talking about what #dataforgood means to them.


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


Uncovering psoriasis with patients like you

Posted November 1st, 2013 by

World PSO Day

This is it, the last report in our 5-part series of seasonal surveys focused on uncovering the experiences our psoriasis members. Like the seasons before it, this summer more than 300 psoriasis community members added their voices to research to help everyone understand what it’s like to live with the condition. Thanks to everyone who shared their experiences and helped uncover a little more.

Here’s a sneak peek:

Summer facts
What do we know about those who took part this summer? The average age of those who answered this survey was 48, and 70 percent of respondents were women. These people also told us about what activities they prefer. A majority of members enjoy swimming in the summer, and out of the swimmers, more preferred the pool (39%) than the ocean (35%). And when it came to clothing choices, we learned that the majority of you (70%) are actually fine with ‘uncovering’ a little skin, choosing to wear T-shirts and shorts versus long sleeves and pants.

Uncovering Psoriasis

You can check out the full results by downloading this report — Patient Voice: Uncovering Psoriasis (Summer 2013). You’ll find in-depth look at how our members with psoriasis rated their “skinpact1” this summer along with what specific factors can increase it, from age to the location of an outbreak to the percentage of the body covered with itchy, red plaques (a measurement known as the Body Surface Area or BSA score).

Interested in other seasonal psoriasis insights? Here’s a recap of the other seasonal reports, made possible by the experiences that PatientsLikeMe members have shared over the past year:

Want to connect and learn from psoriasis patients like you?


1 The Dermatology Life Quality Index (DLQI) is used to measure the “skinpact” that psoriasis can have on patients. It asks questions like “How self-conscious are you because of your skin”, “How much has psoriasis interfered with your personal activities”, or “Does your skin condition affect your ability to do sports?” The questionnaire runs from a low score of 0 (no impact) to a maximum of 30 (extremely large impact).