11 posts from June, 2013

The “Are You Sleeping?” campaign kick off. How the PatientsLikeMe Team sleeps

Posted June 30th, 2013 by

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Sleep and its impact on our lives is one of the hottest topics on PatientsLikeMe. It’s one reason why, over the next several months, PatientsLikeMe is going to be taking a deeper look at your sleep experiences and how they affect your overall health. So, we want to know – Are you sleeping? Keep an eye out for conversations about sleep in the forums, insomnia topics in the newsletter and research surveys that will help uncover more about sleep (or lack thereof). We’ll take a look at everything you’re sharing over the next few months and tell you more about what we’re seeing (stay tuned!) There are many things that can impact our sleep, so let’s get the conversation going and start catching some more Zzzzz’s.

To kick off our “Are You Sleeping?” campaign, we recently went ‘under the covers’ with this PatientsLikeMe staff quick poll. Sixty one of us completed it and below are highlights of what we found about our teams’ own sleep. How do we compare to your experiences?

How well are you sleeping?
All in all, we found that the majority (89%) of our staffers are sleeping OK or better.

How well are you sleeping?

 

On average, how much sleep do you get every night?
Although our Zzzz’s are OK, 61% of us are only getting between 5-7 hours a night. (And according the Center for Disease Control and Prevention that’s way less than the recommended 7-9 hours for adults.)

How many hours?

 

Do you have a problem…
For those who fessed up to having sleep troubles, more people said it’s staying asleep that’s the issue (77%).  (While we didn’t do hard research on this, we can anecdotally share that many people around the office have toddlers and infants at home, so that could be a contributing factor.)

sleep problems

 

What have you tried to help you fall asleep?
When it comes to needing sleep aids to catch those Zzzz’s, you’ll see more of our employees turning to solutions like books (60%), lifestyle changes (50%), TV (31%), relaxation (31%) and sex (33%). Some of us try over-the-counter interventions (22%), prescriptions (16%) and homeopathic techniques (14%). (We also asked what’s least helpful and found ‘watching TV’ tops that list.)

Tried to fall asleep

 

Since joining the PatientsLikeMe team, do you…
And last but not least, since joining the PatientsLikeMe team, only a handful have had changes in their sleep with 13 people saying they sleep less (23%) and, surprisingly, 5 (8%)  now sleep more. (Obviously, those 5 people just don’t have enough to do. We’ll fix that.)

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How does your sleep compare to ours? Update your symptoms, including insomnia, on your PatientsLikeMe profile. And here’s a glance at what some of your fellow community members are saying on the “How the PatientsLikeMe Team sleeps” forum thread.

  • “My sleep is practically non existent, if I get a full hour of unbroken sleep I count that as a good sleep.”
  • “I sleep maybe 3-4 hours a night. I get up & read a little & then go back to sleep for about another 3-4 hours. Very rarely do I sleep 5 hours at a time.”
  • “My problem is I am extremely tired all day long.  I do sleep like 5-6 hours in bed sometimes, wake up, and go sit in the recliner.”

Not a PatientsLikeMe member? Not a problem. Start your own profile for free and tell us… are you sleeping?

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“The real me” An interview with psoriasis patient and PatientsLikeMe member Maria

Posted June 27th, 2013 by

Here at PatientsLikeMe, we’re continuing to talk with people who are sharing their health experiences to help raise awareness about their conditions and change medicine for good. For our latest interview, we spoke with Maria who has been living with psoriasis since age 14. Some of you may know her on PatientsLikeMe as pinkdragonrider. She recently took some time to talk with us about life growing up, treatments she uses and what she thinks those who don’t have psoriasis should know.

Maria

On your PatientsLikeMe profile, you say you’ve had psoriasis since age 14, with worsening symptoms in your 20’s. Did you experience any stigmas growing up with psoriasis?
I consider myself very lucky in that my psoriasis was confined to my scalp until my early 20s. Growing up, I thought I had the worst, most embarrassing case of dandruff, and itchy flaky skin behind my ears. Thankfully, my hair covered most of my lesions. I was not formally (or correctly) diagnosed until I was 23. Only looking back at my childhood do I know realize that I had psoriasis since my early teens. After I graduated from college, which was around the time I had a critical health crisis and suddenly and violently developed irritable bowel syndrome (IBS), the first plaques on my legs and arms began to appear. Ashamed and embarrassed by my skin, I wore long pants and long sleeves as close to year-round as possible. When I did show my skin, people stared, pointed at me, children asked rude questions very loudly, and I was asked to leave a public pool, because someone said I had leprosy. That was the single-most humiliating experience of my life and I am thankful that it has only happened once.

I am glad that psoriasis commercials appear on TV and my hero is Carrie Dee English. Now that a gorgeous woman has the condition and is not afraid to be photographed when she is flaring very badly, I am much less likely to hide my skin. Sometimes people stare, but they generally do not say anything within earshot and usually don’t point in my direction. So, social situations are less stressful for me now. I strongly prefer to swim or use hot tubs at my friends and family’s houses, though, because they know about my condition and never give me a hard time about my skin. They see the real me and I love them very much for the confidence they continue to instill in me.

Tea Tree Oil Ultra-Moisturizing Body Wash with Olive Oil and Acai Extract is a favorite of yours and seems to be working well. Natural remedies are a big topic of discussion on PatientsLikeMe. What other remedies did you try before finding what works? Any biologics?
When I was first diagnosed, I was prescribed several different topical and oral treatments such as Dovonex, Clobetasol, Nizoral shampoo, and oral steroids. I hated using topical medications, because my BSA was so high that it took an hour or longer to put creams, lotions, or ointments on every lesion and most of the treatments would stain my clothes, towels, and sheets or would thin my skin. The ointments were the worst for staining and feeling greasy or becoming runny with body heat. So, now I refuse to use any topicals, because they are such a waste of my time and money (they are expensive even with insurance) and they generally do not work for me.

As for biologics, I have never tried them and I do not plan to, because I am absolutely terrified of the side effects. I always read the complete list of possible side effects for any drug before using it. I do realize that some of the more horrific side effects are unlikely, but knowing that they are possible is scary enough for me to say, “No way!” For me, having clear skin is not worth risking tuberculosis, cancer, blood disorders, seizures, multiple sclerosis and other issues. So, until there are much safer and more effective products from which to choose, I will stick to my natural and home remedies, thank you very much.

What’s it been like to connect with others living with psoriasis on PatientsLikeMe?
Reading other peoples’ stories and experiences has saved me money, disappointment, and time by knowing what has worked most consistently for others and which medications have been mostly wastes of time, effort, and money. Also, it helps to know that there are others out there who know exactly what I am going through and where I am coming from.

We usually ask our interviewees what they think other psoriasis patients should know. But I wanted to ask you instead, what do you think everyone who doesn’t have psoriasis should know about the condition?
I need people to know that psoriasis is not contagious in any way shape or form. It is not related to leprosy or any other “big, scary” disease. It is a genetic disorder that poses absolutely no risk to you or others. Our skin may not look pretty or handsome, but we are generally lovely on the inside. That’s really what we want you to see; our personalities. Just give us the same chance that you would anyone else. You may be surprised to find that your pre-judgment was wrong. Lastly, if you have a question about our condition, please feel free to ask us in a tactful, kind way. Most of us are happy to educate others about psoriasis.


“It’s all about attitude.” An interview with multiple sclerosis patient and PatientsLikeMe member Alys

Posted June 26th, 2013 by

Have you met Alys yet? Some of you may know her on PatientsLikeMe as browneyedgirl3. Alys was diagnosed with multiple sclerosis (MS) back in 1987 and has been sharing her own personal health journey on PatientsLikeMe since 2009. She recently took some time to talk to us about her diagnosis, staying optimistic and what inspired her to write a book.

Alys

Can you tell us a little about your experience with MS? What your first symptoms were and when you were diagnosed?
I didn’t give MS much thought until I was forced to examine the disease on a personal level. I began having symptoms at age 16. I initially had sensory symptoms like numbness, pain, burning, vertigo and fatigue. The headaches were unpredictable but I would just excuse them as typical teenage stresses. The blurry vision was a bother as well. I was diagnosed November 18, 1987 while working as a registered nurse (RN). I was 21 years old.  I was the charge nurse that night so I was busy and exhausted. Suddenly, I was discovering what many people with MS are dealing with on a daily basis and I didn’t like it! I began to encounter symptoms at an age younger than most. Now, MRIs were being used to diagnose MS, so the diagnosis was made quicker than when I was 16.

In your PatientsLikeMe bio you talk about staying optimistic and keeping your smile on. What are some of the ways you do that?
I manage to do my best to be optimistic, as I have learned by my own experience with this illness, that the positive behavior has given me much better results than negative. I have learned how negative energy is wasted energy-counterproductive, and I don’t have energy to waste! By being an example of how effective a smile and positive behavior can be, I get satisfaction knowing I gave someone hope that this is not all there is to life, just an inconvenience, but it’s up to the individual how they choose to deal with it. We are more in control of our life choices than we give ourselves credit for. I believe that is an awesome revelation!

I understand you’ve written a book; It’s All About Attitude. Can you tell us a little about it and what inspired you to write a book?
I have been keeping a journal since the year prior to diagnosis. It was given to me as a Christmas gift from my older sister but I managed to write in it often as I grew up. I would bring my journal with me each time I was hospitalized to describe my symptoms, feelings, how the MS was affecting me THIS time as I try to live just like everyone else was living their lives. I had to keep on altering my life to accommodate the unwelcomed guest – MS.  The nurses on the floor would send other patients with MS to my room because I was a nurse with MS. As I would meet many others with MS, they would see my journal and I would show them how I was documenting my experiences. They would encourage me to write a book but I would just tell them no, this is just for me. Then, as I had more challenges with chronic illnesses, I thought, this is more than I was prepared for. Currently I am married, that’s right; he married me knowing I have MS. We have a son to raise and I am determined to teach him what I have learned during my life as I am continually battling chronic illnesses along with the same challenges most people encounter. I must teach him what I have learned about life and how it might not go as planned, but no matter what you encounter, whatever choices you are able to control, make wise decisions since you are the one who has to live with it.

As an RN, are there any unique insights you’ve discovered about MS over the years?
As an RN I have learned how I am in control of what meds I take or what treatments I allow to be done to me. I have also learned empathy for others. I have also come to the realization that just because someone is a doctor, I should not hesitate to question prescriptions or treatments for me. The doctor IS working for me?! Also, physical therapy is so important. I must move this body to remind it how!  I don’t want to become a professional wheelchair sitter! I have learned how well I have learned to sit because I’m sitting here typing instead of exercising!

If there were one thing you’d want every MS patient to know, what would that be?
I would have to say that the ultimate lesson I have learned that I would want other MS patients to know is what I tell others: It really is important to face an MS diagnosis with a positive attitude. It’s up to you.  See? Something you can control!


“Unmasking the Mystery” Raising awareness for migraines

Posted June 24th, 2013 by

Do you know how many people are affected by migraines? And how many are men, women or children? Here are some quick stats…

  • About 36 million Americans (10% of the population) live with migraines
  • And about 27 million of those are women
  • For 14 million people, they experience chronic daily headaches
  • Migraines can start at a young age. Half of all migraine sufferers have their first attack before the age of 12.[1]

Migraine

June is National Migraine Awareness Month and there are some unique and simple ways you can get involved. Try adding a purple ribbon to your pictures on Facebook with PicBadges. You can also take part in the blog challenge, or the tweet challenge.

If you’re living with migraines, find others just like you in our growing community of more than 5,000 migraine patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forum.



[1] http://www.migraineresearchfoundation.org/frequently-asked-questions.html


Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”

Posted June 22nd, 2013 by

Over the last few months, Keith and Sarah have been sharing their journey with us. In this final interview of our three-part series, they talk about how he got on a transplant list and their “phones at the dinner table” policy. If you missed our first two interviews with Keith and Sarah, you can find them here.

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What did you have to do to get on a transplant list? Did you have to meet certain criteria?
[Keith] The transplant assessment process is an intense and very time-consuming one. When you are contacted about being assessed for transplant, you are sent a large envelope listing out a weeks worth of testing, doctors visits, and appointments in Toronto at Toronto General Hospital. The hospital evaluates you on many things, and ultimately if you are deemed “healthy” enough (because you can actually be too sick, or too healthy) as a result of this testing, you are placed on the list. There were psychological assessments, nuclear cardiac testing, liver testing, kidney testing, pulmonary function testing, physical testing, blood tests (LOTS of blood tests) to name a few.

Can you talk about your “phones at the dinner table” policy and how it changed?
[Sarah] Phones allowed at the dinner table. Most families discourage this, as it is always nice to have the family come together at the end of the day and talk about their day. The one time when people are tuned to each other as opposed to their devices! Once Keith was placed on the list, we were waiting for that call to come which would signal the next phase of our life. This meant that our phones were even MORE attached to us, and yes, were placed on the dinner table until that call came.

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How are you doing post transplant?
[Keith] I feel fantastic! Being able to breathe with deep breaths every minute has been the most life changing experience for me. I am still sifting through a bit of a fog with some pain medications but as they are reduced, I find myself feeling more and more enthusiastic about what lies ahead. Each day is a gift, and I am enjoying my “bonus round.” The realities of transplant are such that we never know what tomorrow will bring, so I am living my life to the fullest every day that I am here.

What’s the one thing you both think every rare lung disease patient should know?
[Sarah & Keith] There is hope. With awareness we can educate people on the necessity to be organ donors, which can ultimately get rid of the list! The transplant program at Toronto General is exceptional and if you do what they tell you, take care of yourself and do your physio…there truly is hope for a better life with new lungs. The hospital’s goal is to help you through your disease in any way possible, and transplant is the last option, but if you need it, this is the place to be.

Sarah and Keith are part of our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness and change healthcare for good. Sarah started blogging about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath.


Partnering with patients: An interview with Michael Evers and Ken Getz

Posted June 20th, 2013 by

PatientsLikeMe and the nonprofit Center for Information and Study on Clinical Research Participation (CISCRP) recently announced a new partnership with the global healthcare leader Sanofi (NYSE: SNY) to raise awareness about the benefits of participating in clinical trials.

Michael Evers, Executive Vice President of Marketing and Patient Advocacy at PatientsLikeMe, and Ken Getz, Founder and Board Chair of CISCRP and an associate professor at the Tufts University School of Medicine, share their views on why spotlighting “Medical Heroes” (those who “give the gift of their participation in clinical trials” to advance medical knowledge) and increasing awareness about clinical trial opportunities will help get the best medicines to patients faster.

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Michael Evers                           Ken Getz

 

What’s this partnership all about?

ME- Given our missions and beliefs in the power of clinical research, it simply made sense for our three companies to collaborate. It’s an exciting alliance – and the first for PatientsLikeMe where we’re partnering with a pharma leader like Sanofi and a nonprofit like CISCRP to do a widespread awareness campaign on the power of research participation. For example, with our 200,000-member community and Clinical Trial Awareness tool, we’ll be able to match patients with relevant Sanofi trials and work with CISCRP to provide educational materials about the clinical trial process. Similarly, our partners are interested in directing their clinical trial participants to PatientsLikeMe where they can use tools to better manage their disease while participating in real-time research every day. Like I said, there was a lot of synergy here.

KG- We all share the same goal – to empower patients with information that helps them make informed decisions about whether to participate in clinical research and ultimately to ensure that the right treatments make it to the patients who need them in an efficient manner. This partnership is really about an integrative approach to empowering patients through closer collaboration with research sponsors, patient networks and a nonprofit educator.

 

Can you tell us a little about these “Medical Heroes?”

KG- CISCRP launched this groundbreaking public service campaign back in 2008 to portray the image of the clinical research participant as a Medical Hero. The Medical Heroes campaign provides recognition for the profound “gift of participation,” while raising awareness of the participant’s significant contributions to advancing public health. Clinical study volunteers are medical heroes found in ordinary, everyday places. Even though they advance public health, these medical heroes are under-acknowledged and under-appreciated.

ME- The Medical Heroes campaign that CISCRP has developed is so powerful. It’s an inspirational way to show how people’s participation in clinical trials is such a selfless gift and crucial part of advancing medicine for everyone. What struck a chord with us is how well this campaign described many of our members – those who participate in real-time research every day by logging onto PatientsLikeMe and sharing data about their experiences.

 

What else do you want people to know about this partnership or what’s ahead?

KG- It’s widely known that clinical trials are less efficient and are taking longer to complete. Patient recruitment and retention is extremely challenging and a major contributing factor to study delays. The main goal of this collaboration is to leverage the power of interactive communities with outreach and educational materials to truly engage patients as partners in advancing medical knowledge. Ultimately, we hope that this collaboration will demonstrate a new approach to improving recruitment and retention rates and to help reduce study delays. The patient is waiting for new and better treatments – and expects this from all of us.

ME- Ken said it well – this is all about engaging patients as partners. That’s the only way we can get to better research, better treatments and better medicine. The more Medical Heroes there are contributing to research, the faster we can get there. That’s a win for everyone.


Living with diabetes: An interview with Dr. Richard A. Jackson

Posted June 18th, 2013 by

For many, living with diabetes can be an overwhelming experience that comes with serious health concerns including heart attack, stroke, kidney complications and eye problems. However, Dr. Richard Jackson thinks there is another reason diabetes patients may feel overwhelmed… the medical establishment. “A typical diabetes education program series might tell you 150 things, but that might be 148 things too many.”

Jackson

Dr. Jackson is Director of Medical Affairs, Healthcare Services, a Senior Physician and the former Director of the Hood Center for the Prevention of Childhood Diabetes at The Joslin Diabetes Center. He is an Assistant Professor of Medicine at Harvard Medical School. He has been studying diabetes for over 30 years, led the first National Institutes of Health clinical trial to study diabetes prevention, and works to find the most effective ways to get the best information out to the patients themselves.[1] National Diabetes Alert Day was not too long ago, and Dr. Jackson took some time to share his thoughts. Here’s just a snapshot of some of the questions he answered. Click below to hear the entire interview.

      1. Why are more people developing diabetes?
      2. What can I do to help someone I know with diabetes?
      3. Why is diabetes so overwhelming and what can be done about that?

 

If you’re living with type 1 diabetes, or type 2 diabetes, find others just like you in our growing communities on PatientsLikeMe. Learn what others are doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.

 


[1] http://www.joslin.org/diabetes-research/richard_a_jackson.html


PatientsLikeMe and inVentiv Health Partner to Accelerate Clinical Trial Research

Posted June 17th, 2013 by

First Agreement Between the Online Patient Network and Global Clinical Research Organization Promises to Help Speed Recruitment for Drug Development 

BURLINGTON, MASS.  June 17, 2013 — inVentiv Health, offering best-in-class clinical, commercial and consulting services, today announced a partnership with the innovative online patient network PatientsLikeMe to bring more people more quickly into medical research and clinical trials.

This is the first such agreement between the global patient recruitment organization for inVentiv Health Clinical and PatientsLikeMe, whose 200,000 members share information and experiences on more than 1,500 different diseases and conditions. PatientsLikeMe members, already interested in the development of new treatments, can now become even more active in medical research by accessing information on clinical trials conducted by inVentiv’s pharmaceutical customers.

”inVentiv Health will be able to quickly recruit potential trial participants by tapping into one of the fastest growing and most active patient networks online, so that our customers can speed up the development of drugs, devices and treatments to improve patients’ lives,” said Raymond Hill, President of inVentiv Health Clinical.

PatientsLikeMe members share their experiences so that they can learn more about disease, help others, and contribute data to real-time healthcare research.

“We’ve pioneered a way for people to learn from, share and contribute health data, and removed traditional barriers between researchers and patients,” said Michael Evers, Executive Vice President of Marketing and Patient Advocacy at PatientsLikeMe. “inVentiv Health is a critical partner who shares our goal of streamlining research to quickly get better treatments to the people who need them.”

This agreement is the second recent announcement of a novel partnership focused on accelerating clinical trials.  In March, inVentiv announced that it had taken an equity stake in Mytrus, which has been expanding the boundaries of traditional clinical trial research with technology that allows trial sponsors to use electronic informed consent, a significant improvement in efficiency and speed.  The company expects to make a third announcement of a major technology partnership within the next few weeks.

About PatientsLikeMe
PatientsLikeMe 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. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 30 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us on our blog, on Twitter or via Facebook.

 

About inVentiv Health
inVentiv Health, Inc. is a leading global provider of best-in-class clinical, commercial and consulting services to companies seeking to accelerate performance. inVentiv offers convergent services that deliver extraordinary outcomes to clients whose goal is improving human life. In 40 countries around the world, inVentiv’s [13,000] employees help clients rapidly transform promising ideas into commercial reality. inVentiv clients include more than 550 pharmaceutical, biotech and life sciences companies, as well as companies that now see health as part of their mission. inVentiv Health, Inc. is privately owned by inVentiv Group Holdings, Inc., an organization sponsored by affiliates of Thomas H. Lee Partners, L.P., Liberty Lane Partners and members of the inVentiv management team. For more information, visit http://www.inventivhealth.com.

 

This press release contains forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995. Such forward-looking statements involve known and unknown risks that may cause our performance to differ materially. These forward-looking statements reflect our current views about future events and are subject to risks, uncertainties and assumptions. We wish to caution readers that certain important factors may have affected and could in the future affect our actual results and could cause actual results to differ significantly from those expressed in any forward-looking statement. Such factors include, without limitation: the impact of our substantial level of indebtedness on our ability to generate sufficient cash to fulfill our obligations under our existing debt instruments or our ability to incur additional indebtedness; the impact of customer project delays and cancellations and our ability to sufficiently increase our revenues and manage expenses and capital expenditures to permit us to fund our operations; the impact of the consummation of any future acquisitions; the impact of any change in our ratings and the ratings of our debt securities on our relationships with customers, vendors and other third parties;  the impact of any additional leverage we may incur on our ratings and the ratings of our debt securities; our ability to continue to comply with the covenants and terms of our senior secured credit facilities and to access sufficient capital under our credit agreement or from other sources of debt or equity financing to fund our operations; the impact of any default by any of our credit providers; our ability to accurately forecast costs to be incurred in providing services under fixed price contracts; our ability to accurately forecast insurance claims within our self- insured programs; the potential impact of pricing pressures on pharmaceutical manufacturers from future healthcare reform initiatives or from changes in the reimbursement policies of third-party payers; our ability to grow our existing client relationships, obtain new clients and cross-sell our services; the potential impact of financial, economic, political and other risks, including interest rate and exchange rate risks, related to conducting business internationally; our ability to successfully operate new lines of business; our ability to manage our infrastructure and resources to support our growth; our ability to successfully identify new businesses to acquire, conclude acquisition negotiations and integrate the acquired businesses into our operation, and achieve the resulting synergies; the resolution of purchase price adjustment disputes in connection with our recent acquisitions and related impacts; any disruptions, impairments, or malfunctions affecting software as well as excessive costs or delays that may adversely impact our continued investment in and development of software; the potential impact of government regulation on us and on our client base; our ability to comply with all applicable laws as well as our ability to successfully adapt to any changes in applicable laws on a timely and cost effective basis; our ability to recruit, motivate and retain qualified personnel, including sales representatives; the possibility that client agreements will be terminated or not renewed; any potential impairment of goodwill or intangible assets; consolidation in the pharmaceutical industry; changes in trends in the healthcare and pharmaceutical industries or in pharmaceutical outsourcing, including initiatives by our clients to perform services we offer internally; our ability to convert backlog into revenue; the potential liability associated with injury to clinical trial participants; the actual impact of the adoption of certain accounting standards; and our ability to maintain technological advantages in a variety of functional areas, including sales force automation, electronic claims surveillance and patient compliance. Holders of our debt instruments are referred to reports provided to investors from time to time and the offering memoranda provided in connection with the issuance of our notes for further discussion of these risks and other factors.


Out of the office: PatientsLikeMe at the Walk to Cure psoriasis in New York City

Posted June 13th, 2013 by

Last month, some of our PatientsLikeMe team members journeyed from Boston to New York City for the National Psoriasis Foundation’s Walk to Cure event. Hundreds of people turned out to walk on a very crisp, but sunny day. Jim Murray is on the PatientsLikeMe marketing team and shared his experience with everyone at the office when he got back.

“It was an incredibly inspiring day. One woman told us that she never misses a walk, but it wasn’t always that way. A family member convinced her to attend one of the walks a few years back, even though she was suffering from severe psoriasis and didn’t want to leave the house. She finally decided to go, and said that it brought tears to her eyes to see and connect with others just like her. She hasn’t missed a walk since.

There was another woman who has a 26-year-old son with psoriasis. She said he was too embarrassed and depressed to come with her to the event, but she came anyway, to learn how others cope with the same emotions her son is experiencing.

Everyone who we spoke to said that connecting with others who understood what they were going through positively impacted their lives; that talking to someone who could truly relate was important. We also heard many saying that they wanted to get more involved in the healthcare process by sharing their experiences in research.”

If you’re living with psoriasis, find others just like you in our growing community of almost 4,000 psoriasis patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forum.


PatientsLikeMe Names Marcia Nizzari Vice President of Engineering

Posted June 6th, 2013 by

CAMBRIDGE, Mass.— June 6, 2013—PatientsLikeMe has named Marcia Nizzari Vice President of Engineering. In this role, Marcia creates the blueprint for future platform developments and oversees all engineering projects. A member of the management team, Marcia reports to Chief Operating Officer Sebastiaan Foppema.

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“Marcia has joined the team at a time when we’re evolving our website to meet emerging patient needs and securing more partner projects,” said Foppema. “Her software expertise and technical management experience will be instrumental to ensuring we align our resources with the best interests of patients and partners.”

Marcia joined PatientsLikeMe from molecular diagnostics lab Good Start Genetics, where she was the Director of Bioinformatics and High Performance Computing/IT responsible for software engineering, informatics, and IT personnel. Before that, Marcia was Director of Informatics for the Program in Medical and Population Genetics at the Broad Institute of the Massachusetts Institute of Technology (MIT) and Harvard University. She has also held senior supervisory roles at Cambridge Research & Instrumentation (now part of PerkinElmer) and Thomson Financial. Marcia holds a Master of Science degree in Computer Science from Boston University and a Bachelor of Music degree in Performance from the New England Conservatory of Music.

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. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 30 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.


“Take the step.” Raising awareness for post traumatic stress disorder

Posted June 4th, 2013 by

June is Post Traumatic Stress Disorder (PTSD) Awareness Month and the US Department of Veterans Affairs is helping to raise awareness of the condition. About 60% of men and 50% of women will go through at least one traumatic event in their life, and 5.2 million adults will experience PTSD during any given year.[1]

PTSD

Here are just a few useful tools to check out…

If you’re living with PTSD, find others just like you in our growing community of more than 5,000 PTSD patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.



[1] http://www.ptsd.va.gov/public/pages/how-common-is-ptsd.asp