159 posts in the category “Research”

Your data doing good: The Fitbit study

Posted December 4th, 2015 by

When you share your health data, we all learn

During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members have selflessly shared, and all the good data donation is doing. One example is the Fitbit study we partnered with Biogen on earlier this year. Nearly 250 members living with MS took part in the study, using Fitbit trackers to monitor their walking activity. What did we all learn? That combining the data members add to their PatientsLikeMe profiles with data collected by activity trackers can impact self-discovery and research.

We’ve all seen the popularity of wearable devices (like activity trackers) soar in the last two years. They can keep track of the calories you eat, the steps you take, the sleep you get, and just about everything in between. They’re practical too: easy to use, progressively cheaper to buy, and so low-key that you almost forget they’re there.

As PatientsLikeMe is watching the world of devices evolve, we’ve actually been thinking about its potential impact in a different way, and on a totally different level. These devices make it easier to monitor what’s going on for patients in the real world and in between doctor visits, not just at one point in time, or at appointment with your care team.

Why does this matter to anyone living with MS? For the 45,000 members of the MS community on PatientsLikeMe, they know that the condition can impact their ability to get around. Yet, the standard test to measure how they’re doing over time is the walking test. It’s typically conducted in the perfectly flat and safe hallway of a doctor’s office. That’s not exactly the real world, where pavements can be uneven, obstacles get in the way, and the distance you need to walk is usually a lot farther than 25 feet.

So we thought about the data tracked while using these devices and the impact that they could have in a patient’s life. Could devices help give patients a bigger picture of their habits and health, and help them have more informed conversations with their care team about what to change to improve their outcomes?

Earlier this year, PatientsLikeMe partnered with pharmaceutical company Biogen to find answers, and set out to design a patient-centered study using wearable devices. We kicked off the study with 248 PatientsLikeMe members living with MS. Our goal was to learn if people living with MS could use wearable activity trackers to collect and share their mobility data, which could potentially provide relevant information to their care team and to other patients. Study results were presented at the 67th American Academy of Neurology’s (AAN) Annual Meeting in Washington, DC in April, and here’s what they revealed:

Members were engaged in tracking their activity, even though nearly half had never done so before.

  • About 82% of those that took part activated their Fitbit and authorized PatientsLikeMe to access their data.
  • As a group, they synced their devices an average of 18 days over the 21-day study, for a remarkable 87% adherence rate. Said another way, they stuck with the study. (Now, that’s really donating data!)
  • During the study they walked more than 15 million steps, the equivalent of 6,820 miles or the distance from Boston to Beijing, China.

The study had a lasting impact.

Annette, a PatientsLikeMe member and study participant who had never used a wearable activity tracker before, said she got a lot of positive reinforcement to do more each day. “The Fitbit also allowed me to track what I was eating and how I was sleeping. I made more positive choices as a result.”

Those 248 members used their Fitbits for four weeks, and then we reached out to them with a follow-up survey to get their feedback. About 190 of them completed the survey, and here’s some of what we learned:

  • 89% believe activity tracking is important for health management.
  • 55% believe that the device helped change their health routine.
  • 68% said the device would help them manage and track their MS.

The study and survey made it clear that activity monitoring has the potential to engage patients as advocates in their own care, and give healthcare providers a realistic view of their patients’ daily activities outside of the office. Just how far and wide that impact can go is what we could study next, thanks to patients like you who took these first steps with us to get it all started.

Share this post on Twitter and help spread #dataforgood during #24DaysofGiving.


ORE Researcher Series: Tamara Kear is listening to kidney patients

Posted June 25th, 2015 by

Over the next few months, you’ll meet a few Open Research Exchange (ORE) researchers, and first up is Tamara Kear, PhD., R.N., CNS, CNN. She has over 20 years’ practice as a nurse caring for patients with kidney disease. Her research is focused on hypertension, one of the factors that can lead to a person developing kidney disease.

Tamara has developed a scale for healthcare providers that helps them learn how well a patient is doing at home and identify barriers they are experiencing in managing their hypertension. Her goal is to develop a better tool. In her video, she explains her ORE research and her philosophy that patients should be “not just informers for researchers, but actually the researchers themselves.”

What exactly is the ORE? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

Share this post on Twitter and help spread the word.


PatientsLikeMe Out of the Office: Priya Raja talks about cervical cancer awareness

Posted January 30th, 2014 by

My mentor, Professor Lynette Denny, and I

Hi there everyone, my name is Priya and I work as a research assistant on the Health Data Integrity Team at PatientsLikeMe!  Given that it’s cervical cancer awareness month, I wanted to share with you all a global perspective on why screening can be so important. While a Pap smear is something that most women receive during routine visits to the gynecologist, this screening test is unfortunately out of reach for many women around the world. The consequence? Women can show up at the clinic with cervical cancer that has spread throughout their body. And in countries that are resource-strapped for treatments like chemotherapy and radiation therapy, the outlook for these women is, sadly, often very grim. The quandary, however, is that a Pap smear is a very low-cost test that can detect cancer up to ten years before it happens. Even more, being screened just once can reduce the likelihood of having cancer 70% to 80%, and early detection can guarantee nearly a 100% chance for a cure.1

 

 

Patient room where I did interviews

 

As a passionate advocate for women’s health and disparities in cancer care, I was inspired to spend three and a half months speaking with low-income women diagnosed with cervical cancer at a hospital in Cape Town, South Africa—where a Pap smear is a luxury for most women. In South Africa, cervical cancer is the second most fatal cancer in women and is known particularly as a ‘killer of poor women,’ because those of low-income status are the least able to access this screening test.2 South Africa’s unique history with Apartheid, race and socioeconomic status remain linked twenty years later, and the voices of these women remain largely unaccounted for. When I interviewed these women, it was very important to me to have them be the center of this research, and to understand how their own unique journey with cervical cancer—from the first symptoms to finally getting treatment—fit into the greater contexts of their lives and values. I found that a variety of factors contributed to the fact that these women appeared at the hospital too late, but that it mostly boiled down to the interaction between providers and patients.

 

 

Groote Schuur Hospital

We know that patients and providers don’t always speak the same way about illness and disease. For these women, many of whom were going to a hospital for the first time, when providers used words like biopsy, cervical cancer, or radiotherapy, it was a foreign language to them. Instead they described these experiences as “cutting a piece,” or “cancer on the mouth of the womb,” or “being put under a machine.” These are but a few examples of the communication disconnects that led providers to disregard their patients’ inner sense that something was wrong, which led to patients being denied care. Furthermore, some providers weren’t equipped to diagnose cervical cancer, instead mistaking it for an infection, and they repeatedly turned away their patients with antibiotics or pain tablets.

I used the stories of these women to create a set of recommendations for providers, and it turns out that getting these patient voices front and center worked! Recently, my recommendations were implemented by the Department of Health in the Western Cape Province at the same hospital I worked at. They are now preparing to run workshops for providers in the greater Cape Town area to more effectively train them not only on how to identify cervical cancer, but also how to speak with and teach their patients about cervical cancer in a way that makes sense to them.

PatientsLikeMe member PriyaRaja


1 Mosavel, Maghboeba, et al. “Cervical cancer attitudes and beliefs—A Cape Town community responds on World Cancer Day.” Journal of Cancer Education24.2 (2009): 114-119.

Denny, L. (2006). Cervical cancer: the South African perspective. FIGO 26th Annual Report on the Results of Treatment in Gynecological Cancer. International journal of gynaecology and obstetrics: the official organ of the International Federation of Gynaecology and Obstetrics, 95, S211.

2 Menaker, D. (1995, August 22). Apartheid’s cruel legacy: Death by cervical cancer. San Francisco Chronicle. Retrieved from http://www.sfgate.com/news/article/Apartheid-s-cruel-legacy-Death-by-cervical-cancer-3133619.php


PatientsLikeMe RFP for PCORI Funding

Posted May 24th, 2013 by

Last month, the Patient Centered Outcomes Research Institute (PCORI) released a funding announcement entitled, “The National Patient-Centered Clinical Research Network: Patient-Powered Research Networks (PPRNs)—Phase One.” Through this solicitation, PCORI seeks to establish a set of Patient-Powered Research Networks (PPRNs) that complement PCORI efforts to establish a national infrastructure of Clinical Data Research Networks through a separate funding announcement.

As an early pioneer of PPRNs, PatientsLikeMe plans to submit at least one Letter of Intent (LOI) to PCORI next month to declare our intention to submit a funding application later this year. We are looking for research partners who share our patient-centric values and desire to build a continuously learning healthcare system to join us as joint collaborators on our June LOI submission to PCORI. We welcome the opportunity to team with academic researchers, pharmacies, clinicians, patient advocacy organizations, and others who wish to partner with PatientsLikeMe.

DownloadRFPTo that end, we have authored a Request for Proposals (RFP) that outlines the nature of our expected funding application and the information we require from interested collaborators. The goal of the RFP is to identify quality research partners capable of defining high-value, patient-centric research goals worthy of PCORI funding that can be built upon PatientsLikeMe’s existing digital infrastructure and data model. Requirements for responding to this RFP are described in further detail within the RFP itself.

We look forward to receiving high-quality responses to this unique funding opportunity no later than Wednesday June 12, 2013.

PatientsLikeMe member cfidyk


Can Social Media Strengthen Science?

Posted March 25th, 2013 by

And more specifically, can it be used to collect patient data, raise investment funds, make scientific data more accurate and even allow regular people to access the world of venture capital?

This was the provocative question posed to a five-person discussion panel at the 2012 Partnering for Cures conference last fall that included several thought leaders, including PatientsLikeMe’s own Sally Okun, RN, MMHS, who was recently promoted to the position of Vice President of Advocacy, Policy and Patient Safety.

“We have a small subset of people on PatientsLikeMe who have found us and who are gaining some expertise at being what might be called citizen scientists,” says Sally.  “But I think the important piece is that there are so many more people out there that we have to reach and help understand that there is access to so much more information than you are currently getting.  And social media is one way of doing that.”

Tune in below for Sally’s full comments and to hear what the other four panelists had to say about the growing use of social media in science.


PatientsLikeMe Unveils New Tool to Match Patients with Clinical Trials Worldwide

Posted March 13th, 2013 by

Launch at European NHS Healthcare Innovation Expo Comes as PatientsLikeMe Chairman Calls for Revolution in Disease Measurement

CAMBRIDGE, Mass. —  — The U.S.-based patient network and real-time research platform PatientsLikeMe unveils its global clinical trials tool today at Europe’s Healthcare Innovation Expo 2013, hosted by the National Health Service (NHS). The free tool, unveiled today by Research Director Paul Wicks Ph.D., draws on open data to match patients from around the globe with clinical trials based on their condition and location. The U.S. prototype was launched last year and has already helped thousands of patients find suitable clinical trials.  The tool is available at http://www.patientslikeme.com/clinical_trials.

Last week, PatientsLikeMe Co-founder and Chairman Jamie Heywood spoke about innovative solutions to healthcare at the 2013 Nuffield Trust Health Policy Summit in London. Nuffield Trust is an independent source of evidence-based research and policy analysis for improving health care in the UK. Heywood returns to London tomorrow to speak on the Expo’s Masterclass Stage about the importance of measurement in building a learning health system.

In his Nuffield speech, Heywood called for a “revolution in measurement,” or what he calls “measurement-based medicine.” He adds, “We should measure the severity of each condition and its impact on the patient. The measurement should support the patient in life choices, clinicians in care choices and researchers in learning what’s effective. And every patient should be measured as part of the care process to the degree appropriate for the severity of their condition, so that their experience can be used to guide the next patient.”


Creating a Revolution at the Nuffield Trust Health Policy Summit 2013

Posted March 11th, 2013 by

Last week, health leaders from around the world gathered in the UK for the Nuffield Trust Health Policy Summit 2013, a two-day event focused on evidenced-based research and innovative solutions to the challenges facing the National Health Service (NHS).  One of the invited speakers was PatientsLikeMe Co-Founder and Chairman Jamie Heywood, who discussed the drug development process as well how patients can drive value in healthcare.  Tune in to hear Jamie’s well-received presentation below, which was titled “Creating a healthcare revolution.”

Health Policy Summit 2013: Jamie Heywood from Nuffield Trust on Vimeo.


PatientsLikeMe in the News

Posted March 6th, 2013 by

It’s been a busy couple of weeks at PatientsLikeMe.  Here are a few media highlights showcasing all the exciting things that are going on, from new partnerships with Aetna and Boehringer to the major grant we were awarded by the Robert Wood Johnson Foundation to TED2013 Fellow Paul Wicks’ presentation at TED2013 last week.

Paul Wicks at TED2013

PatientsLikeMe Is Building a Self-Learning Healthcare System
(Forbes)

Social Network Could Revolutionize Disease Treatment
(Wired)

PatientsLikeMe Leads Crowdsourcing for Patient Outcomes
(Fierce Biotech IT)

What the NHS Can Learn from Innovative Health Practices Abroad
(The Guardian)

Boehringer Partners with PatientsLikeMe on Rare Disease Community
(PMLive)

Networking Medicine: Patients Take a More Active Role in Science
(The Scientist)

PatientsLikeMe:  Crowdsourcing Healthcare
(AllVoices)

For more PatientsLikeMe media coverage, visit our Press page.


What Is Health?

Posted February 20th, 2013 by

It seems like a basic question, but at PatientsLikeMe, we’ve spent a lot of time thinking about what it means.  Check out Co-Founder and Chairman Jamie Heywood’s thought-provoking presentation below at the Swiss Re Centre for Global Dialogue’s “Future of Human Longevity” conference.

Can you really understand concepts such as health, mobility or well-being without measuring or comparing them?  See why Jamie argues that you can’t – and also why one’s “health span” may be more important than one’s “lifespan.”  Click the image below to tune in.

Click on this screenshot to begin the slideshow presentation.

*After clicking the image above, select the “08:45” link to your left to start the presentation.


Taking Psoriasis Treatment to the Next Level: An Interview with Dermatologist Dr. Jerry Bagel

Posted February 11th, 2013 by

Board-Certified Dermatologist Dr. Jerry Bagel, MD

A nationally recognized psoriasis expert, Dr. Jerry Bagel, MD, has been an investigator on more than 45 clinical trials seeking new treatments for psoriasis and other skin conditions.  In addition to treating patients at his private dermatology practice in East Windsor, New Jersey, Dr. Bagel serves as Senior Attending Physician at the Princeton University Medical Center and Director of the Psoriasis Treatment Center of Central New Jersey.   He is also a three-term member of the National Psoriasis Foundation’s Medical Advisory Board.  What investigational treatment for psoriasis is he currently studying?  And what does he wish more psoriasis patients knew?  Check out our insightful interview below.

1. What led you to focus your research on psoriasis?

I started studying psoriasis when I was resident at Columbia-Presbyterian in 1982-1985. At that time I would spend six months on in-patient service with 30 hospitalized psoriatic patients who would stay in for treatment for a month.   And I realized the burden of disease – the psychological, emotional and physical impact of this disease on people.

So when I opened up my private practice in 1985, I decided that psoriasis treatment and care of psoriasis patients would be a major part of my professional career and so I started seeing a lot people with psoriasis.  I started doing research in 1992 and then just kept working with pharmaceutical companies and developing our own protocols for research into the treatment of psoriasis, trying to find better treatments, safer treatments, more effective treatments.

2. Tell us about some of your most recent clinical trial findings.

The most recent clinical trial I’m doing as of today is IL-17 receptor antibodies with Amgen that is remarkable, using subcutaneous injections once every other week.   People are getting clear within 2-4 weeks, so it’s really a quite effective treatment.  I mean, obviously we don’t know [everything yet], but so far it’s been good at our facility, and the data I’ve read about it seems to be pretty good.  So I think it could take the treatment of psoriasis to another level in the sense that over half the people will probably clear and probably 85% will have a very effective level of clearing.  So it’s going to take it to another level of clearing given what existed before.

3. Speaking of what existed before, what current treatments are most effective in your experience?

Well, we still use phototherapy, but people have to come in three times a week for about 12 weeks. It works about 75% of the time, but people only stay clear for about six months maybe 75% of the time.  So in the end it only works well for about 50% of the people.  But it’s totally safe, so therefore the benefit ratio is high.  We also do all the biologic agents, like Enbrel and Humira and Stelara, and they’re quite effective treatments.

In fact, Enbrel and Humira are FDA-approved for the treatment of psoriatic arthritis as well – and up to 25% of people with psoriasis have psoriatic arthritis.  So it helps the arthritic component of psoriasis as well.   So we do use the biologics, although sometimes we have to tweak them with some systemic therapies.   Sometimes we use cyclosporine, sometimes we use methotrexate.  But the treatment of psoriasis today is certainly a lot better than it was say 10 years ago.

4. Do you have any dietary recommendations for psoriasis patients?

I think diet helps, but I don’t think diet necessarily clears psoriasis for very many people, if any.  But we know that psoriasis is associated with the metabolic syndrome, and many patients are obese and have diabetes, which are inflammatory triggers.  I think patients that eat a low-inflammatory diet – with more fish like mackerel, salmon or anchovies, and less red meat – tend to be better.  Staying away from fatty foods like animal fats, and eating more vegetable fats like nuts, tends to be helpful.  Also, I do think that weight loss tends to help people with psoriasis.  The other culprit is alcohol.  Alcohol is not good for people with psoriasis.

5. What is something you wish more psoriasis patients knew?

I wish more psoriasis patients knew that there are physicians providing effective care for psoriasis.  For instance, today I had a young woman who was 23 years old.  She came into my office with psoriasis covering about 20% of her body.  She’d been to three dermatologists before me, and two of them told her there was nothing they could do about it, and she should learn to live with it.  So I wish there was more education for people with psoriasis to know there are dermatologists or psoriasis caregivers who are interested in the treatment of psoriasis – and a better way of connecting people with psoriasis with the physicians interested in treating psoriasis.


The Ups and Downs of Parkinson’s Disease

Posted February 5th, 2013 by

We are all too aware that Parkinson’s disease (PD) is a progressive illness, with tremors, difficulty walking and other symptoms usually getting worse over time.  Here at PatientsLikeMe, and in the clinic, that progression is measured with the Parkinson’s Disease Rating Scale (PDRS). Although you can never really simplify a whole disease down to a few numbers, having that numerical description helps your health care team track your disease and how you are doing over the long haul.

But if you or a loved one has PD, you know that a decline over time is only part of the story. You probably have good days and bad days, depending on all kinds of factors. Understanding those ups and downs is also big part of living with PD. It may also be a big part of treating it.

A Sample PDRS Chart Showing Ups and Downs in Disease Progression

In collaboration with PatientsLikeMe’s Paul Wicks and MIT’s Max Little and Alex Pentland, I have been studying those ups and downs. In our freely available paper recently published in the Journal of Medical Internet Research, we explored mathematically the dynamics of the PDRS. (If you love math, this is the paper for you!)

One of the most important things we found is that these random fluctuations seen in many patients are large enough that they can be considered “clinically meaningful” – just as big as those long-term progression changes that doctors and nurses consider when they think about what treatments may be best for you. So, it is especially important for your team to know how you’ve been doing over the last few weeks, and not just today.

Knowing your own ups and downs may help you figure out your best possible treatment plan. We also hope that by studying the data shared by lots of people like you, we can understand PD better, which will ultimately lead to better treatments for everyone. As always, thanks for sharing!

p.s. For those of you keeping up, yes, the Max Little mentioned above is the very same applied mathematician we’ve partnered with to help advance his groundbreaking research at the Parkinson’s Voice Initiative.  Don’t miss this recent CNN profile of Max’s exciting project, which is based on the theory that the voice (as recorded via a simple phone call) can be used as a biomarker for PD progression.

PatientsLikeMe member tvaughan


A Study by Northwestern University School of Medicine Links Psoriasis to Obesity in Children

Posted January 29th, 2013 by

It’s no secret that being overweight comes with health risks like diabetes, high blood pressure, high cholesterol, stroke and heart attack. After a new study, researchers from Northwestern University School of Medicine in Chicago are closer to adding psoriasis to the list. However, the study did not conclude if psoriasis influences obesity or visa versa. It’s still a bit like asking, ‘What came first, the chicken or the egg?’ Here are the facts of the study:

  • 409 children with psoriasis (ages 5-17) from nine countries participated
  • Children with psoriasis were twice as likely to be overweight
  • Obesity risk for children increased despite their psoriasis being mild or severe

screen-shot-2013-01-29-at-115136-am

According to Dr. Amy S. Paller, Chair of Dermatology at Northwestern Medicine, “one-third of all psoriasis cases start in childhood.” If there is a metabolic link between the two conditions, having a healthy lifestyle earlier on could prove important to managing not only weight and cardiovascular health, but psoriasis as well.

What are your thoughts on this? Add your voice to the forum thread that your Community Moderator Molly started.  Join the conversation.

You can find the entire text of the study here.


PatientsLikeMe’s Jamie Heywood Talks with INSEAD Knowledge

Posted January 28th, 2013 by

“That’s why we built PatientsLikeMe, to lower the cost of discovering new treatments and to measure and understand disease. Together, this community can help reduce the time to determine what works.”
Jamie Heywood

While attending the 2012 INSEAD Healthcare Alumni Summit in London last fall, PatientsLikeMe Co-Founder and Chairman Jamie Heywood sat down with INSEAD Knowledge’s Editor-in-Chief Shellie Karabell to discuss PatientsLikeMe’s model and mission.  What role does Jamie see PatientsLikeMe playing in the healthcare system?  Why does he feel we are a social networking site only in the secondary sense?  How does privacy factor in to how we collect and share data?  Find out that and much more in this insightful interview and accompanying article.


New Efforts Underway to Improve Care for Veterans

Posted January 22nd, 2013 by

With financial support from UCB, the Department of Veterans Affairs and PatientsLikeMe will study patient-reported outcomes.

Today, the U.S. Department of Veterans Affairs’ Epilepsy Centers of Excellence (ECoE), biopharmaceutical company UCB and health data-sharing website PatientsLikeMe announce a new study to better understand what factors improve health outcomes for veterans with epilepsy.  The ECoE has recently completed a pilot study focused on collecting and sharing real world, patient-reported data on seizure frequency and severity, treatment adherence, patient and physician dialogue and overall quality of life. The study is now open and available to all veterans living with epilepsy at www.poemstudy.org.

“This collaborative effort, with partners from government and private industry, provides an exciting opportunity to improve the outcomes of the thousands of veterans with epilepsy. Our work together may also deliver insights into how we can improve the care for anyone with epilepsy,” says study lead and ECoE’s John Hixson , M.D.

As part of their initial partnership to help epilepsy patients, which began in 2010, PatientsLikeMe and UCB conducted a study of members of the PatientsLikeMe epilepsy community that showed that people with epilepsy who joined PatientsLikeMe better understood their own seizures and improved adherence to their medications.1,2 The new study of veterans will integrate validated clinical outcome measures alongside the patient-reported benefits of the online PatientsLikeMe community. The community platform allows patients to update their physician on aspects of their epilepsy, such as changes in symptoms and medication side effects, and enables physicians to view this patient data prior to clinic visits. The goal is to provide a complementary support system that enhances clinic visits and improves patient outcomes.

UCB, a leader in epilepsy, is providing the funding for the study. “We are committed to improving the standard of care for people living with epilepsy. We believe that this collaboration will address some of the unique challenges faced by veterans impacted by epilepsy and will be a model for other providers of care,” says Patty Fritz , Vice President, Corporate Affairs and Operations at UCB.

According to the ECoE, approximately 5.6 million veterans visit VA Medical Centers each year, and approximately 66,000 of these veterans are diagnosed with seizures or epilepsy. Epilepsy is a chronic neurological disorder defined as two or more unprovoked seizures.3

Adds Jamie Heywood , co-founder and chairman of PatientsLikeMe, “This is a great opportunity to validate our earlier findings, which revealed that epilepsy patients using our website reduced side effects, increased compliance and reduced ER visits. Our partnership further demonstrates how committed UCB and the VA are to advancing innovation in health care. Collaborations like this will build the foundation for a patient-centric future in medicine.”

References
1. Wicks, P., Keininger, D. L., Massagli, M. P., de la Loge, C., Brownstein, C., Isojarvi, J., & Heywood, J. (2011). Perceived benefits of sharing health data between people with epilepsy on an online platform. Epilepsy & Behavior.
2. De la Loge, C., Massagli, M., Wicks, P. PatientsLikeMe®, a data-sharing online community: benefits for patients with epilepsy. Presented at the 63rd Annual Meeting of the American Academy of Neurology (April 9-16 2011), Honolulu, USA.
3. Epilepsy Foundation. About Epilepsy. http://www.epilepsyfoundation.org/aboutepilepsy/. Accessed 9/13/12

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

About ECoE
The VA has funded the Epilepsy Centers of Excellence (http://www.epilepsy.va.gov/). The Centers of Excellence are charged with: (1) establishing a national system of care to all veterans with epilepsy, (2) educating veterans and others in their lives impacted by epilepsy about high quality epilepsy care, (3) providing health professional education and training in order to deliver the highest quality of standard of care to veterans with epilepsy, (4) utilizing national VA and other databases in order to inform providers and policy makers in Central Office about health care delivery and health policy decisions, (5) conducting state-of-the-art research about epilepsy, and (6) implementing an informatics backbone to meet the above objectives.

About UCB
UCB, Brussels, Belgium (www.ucb.com) is a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases of the immune system or of the central nervous system. With more than 8,500 people in about 40 countries, the company generated revenue of EUR 3.2 billion in 2011. UCB is listed on Euronext Brussels (symbol: UCB).