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July 2nd, 2015

Don’t miss out on updates about the LIBRE Project, our research findings and other interesting LIBRE happenings – sign up for our newsletter! These newsletters will only go out a few times a year. They’re the best way to stay in touch with everything going on at LIBRE.

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LIBRE Animated Infographic Updated!

May 13th, 2015

LIBRE's informational video has had a redesign! This short animated infographic was created last fall to describe our project in a minute and a half. Over the past few months, we've worked with Boston University’s student run advertising agency, AdLab, to spruce up the graphics to give the video a smoother look and feel and to add closed captioning.

AdLab also created a static infographic, a poster version of the video below.  We think both the poster and video are great, easy to understand, beautiful representations of the goals of the LIBRE project. Check out the video below and see for yourself!


LIBRE in Chicago: American Burn Association 47th Annual Meeting

May 1st, 2015

Phew, Team LIBRE made it back to Boston safely after a whirlwind week in Chicago, IL for the American Burn Association 47th Annual Meeting. The week was packed full of meetings with burn survivor groups and burn clinicians, giving and attending presentations, displaying our research through posters, and talking with people at our LIBRE booth while handing out chocolate and LIBRE information.


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A View of Sunny Chicago, IL


If you don’t know, the American Burn Association is an amazing nationwide organization dedicated to improving the quality of care for burn survivors. Its members are dedicated to supporting burn-related research, education, care, rehabilitation and prevention. We are so thankful for their support and for the opportunity to attend their annual meeting!

We want to thank everyone that stopped by our LIBRE booth to say hi and talk more about our project and everyone who visited one of our presentations or posters. It was a pleasure to be able to continue to spread the word about LIBRE and start conversations with individuals about the impact burn injury has on daily life.

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Pens, Lindt Chocolates and Informational Cards at LIBRE's ABA Booth

Also, we would like to congratulate our LIBRE team members who gave presentations or had posters at the conference concerning LIBRE and other great burn research they do. Listed below is a snip-bit of what our team members presented last week:

  • Molly Marino, MPH presented Social Participation of Burn Survivors: A Conceptual Framework (the conceptual framework guiding the LIBRE project)
  • Lewis Kazis, ScD  presented overviews of the LIBRE project at several meetings of burn clinicians and burn survivors
  • Colleen Ryan, MD, FACS, presented The Impact of Facial Burns on Patient Reported Health Outcomes Following Burn Injuries in Young Adults: A Five Year Study
  • Colleen Ryan, MD, FACS also presented, Is Real-time Feedback of Burn-Specific Patient-Reported Outcome Measures (PROMs) in Clinical Settings Practical and Useful?
  • Jeff Schneider, MD, showed his poster Assessment of an Interactive Video Game System for Upper Extremity Burn Contractures (which won an award for Best in Category!!)
  • Vivian Shie, showed the poster A Preliminary Study on qEEG in Burn Patients with Chronic Pruritis
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Dr. Colleen Ryan and Dr. Jeffrey Schneider at the award winning poster Assessment of an Interactive Video Game System for Upper Extremity Burn Contractures


Explaining LIBRE – New Infographic Poster

April 21st, 2015

How do you explain the LIBRE project in one visually appealing poster? On a single page, how do you show the impact burn injury has on daily life, why it needs to be studied and how the LIBRE Questionnaire will help us better understand and improve burn recovery? Well, we tasked a group of Boston University undergraduate advertising students to do just that!

Below, check out our beautiful new static infographic created at Boston University’s student run advertising agency, AdLab. We’ve been working with AdLab for the last year and a half. The group has helped us create the LIBRE name, logo, design, flyers and so much more! Keep an eye out for new AdLab designed products coming soon.

Static Infographic

“The New Normal”: LIBRE in Boston University News

March 20th, 2015

Diana-and-Jerry-out-dancing-with-friendsThe LIBRE Project has made it into Boston University School of Public Health news! The article highlights the story of an amazingly resilient burn survivor, Diana Tenney, on her personal path from traumatic injury to what she describes as her "new normal".

Interwoven with Diana’s story are the insights of Amy Acton, the executive director of the Phoenix Society for Burn Survivors. Amy stresses the need to better understand the issues burn survivors face in daily life to create more effective and comprehensive support services.

This, of course, is the gap the LIBRE Questionnaire wants to fill - the gap between what burn survivors need to fully recover and what services are available to them. As the LIBRE Project's Principal Investigator, Lewis Kazis, ScD, puts it, "if you can't measure it, you can't change it."

So check out the full article here and feel free to share it with your friends, family, and social media network. We hope this article starts a broader conversation around issues faced by burn survivors and what we can do to support them on the path to their "new normal".


Halfway There, 300 Surveys Completed!

March 18th, 2015

300 Surveys Completed

Just a quick update from LIBRE headquarters, we officially hit 300 completed surveys this week! We are now half way to our goal for this phase of the project, to have 600 surveys completed by burn survivors.

As always, we're overjoyed by the willingness of burn survivors to take the time to answer our survey questions. Our last update was almost exactly 3 months ago when we hit 200 surveys. This means we collected 100 surveys in 3 months!

This of course also means that we have 300 more surveys to go! We are now focusing on burn survivors that had their injury less than 10 years ago. We have heard less from this group of more recently burned survivors, and want to make sure that their experiences are equally reported in our survey.

Feel free to spread the word to burn survivors injured less than 10 years ago who may be interested completing a survey on social recovery. They can contact us through our website, or by phone or email at 1-844-255-9987 or

LIBRE Staff Left to Right: Rene Soria-Saucedo, Melinda Rossi, Flor Amaya, Molly Marino, Marina Soley Bori



LIBRE Animated Infographic Unveiled

March 4th, 2015

In the Fall of 2014, the LIBRE team worked with Boston University’s student run ad-agency, AdLab, to create our first animated infographic! The infographic is our way of getting the word out, in an easy to understand format, about what LIBRE is and why it’s important.

In under 2 minutes, this video explains the need to better understand the impact burn injury has on daily life and how the LIBRE questionnaire will help to fill this gap. It presents some of the challenges that burn survivors face, how the LIBRE questionnaire is being developed, and how the questionnaire will improve burn recovery.

You can check out the infographic below. It will also be posted on the top of the main page of our website. And feel free to let us know what you think at



LIBRE in Berlin: ISOQOL Conference October 2014

December 3rd, 2014


While this post is a little belated, we would be remiss to not mention LIBRE's recent trip to Berlin! Back in October 2014, Molly Marino, LIBRE staff member and current PhD candidate, flew across the Atlantic to represent LIBRE at the International Society for Quality of Life Research (ISOQOL) Annual Conference. The theme of the conference was Quality of Life: Advancing Measurement Science and Transforming Healthcare.

During the conference, Molly presented a poster describing the conceptual model we're using to guide the LIBRE project and the development of items that will be included in the LIBRE questionnaire. This poster shows, in brief, our analysis from an extensive literature review and the amazing feedback we received from our focus groups and interviews with burn survivors and clinicians.

While Molly had a great time at the conference - attending talks and showing off LIBRE's work - she also managed to fit in some time to see some of the beautiful city that is Berlin. We count ourselves fortunate that we can travel to such great places to share LIBRE with others!



World Burn Congress Success!

October 31st, 2014

Walk of Remembrance

Opening Ceremony - Walk of Remembrance

We just got back in the office from a few days in sunny Anaheim, CA attending the Phoenix World Burn Congress (WBC).  We're still exhausted from an exhilarating few days meeting burn survivors, hearing amazing survivor stories, conducting surveys, and grabbing some California sun.

This conference marked the official beginning of the second phase of the LIBRE project! During this phase, burn survivors are filling out an early version of the LIBRE survey.  The positive response we received from burn survivors at Phoenix WBC concerning the LIBRE project absolutely floored us.

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$417 Raised for the Phoneix Society through Completed Surveys

We completed more surveys in 2 days at Phoenix WBC than we ever felt possible -  70 surveys were completed by burn survivors! Additionally, we made countless contacts with people willing to fill in the surveys from home.

For each survey completed and contact obtained during Phoenix WBC, money was donated to the Phoenix Society for Burn Survivors. We're proud to announce that in total, $417 was donated to the Phoenix Society! Who knew so much could be accomplished in such a short period of time?


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LIBRE Investigators: Lewis Kazis, ScD; Amy Acton, RN, BSN; Colleen Ryan, MD, FACS

In addition to completing surveys, we had some amazing moments connecting with burn survivors at the conference. We all left the congress with the deeply felt belief that Phoenix WBC is really a very special event filled with amazing, loving, passionate people. We can't wait to go back next year!

Now we're back to Fall and back to Boston, where we'll be following up with the amazing contacts we made in Anaheim. We'll also be continuing to conduct surveys for the next year, so if you're interested in participating in a survey, feel free to contact us.

Oh and don't worry, we did manage to bring a little Californian sun back with us.


Drs. Kazis and Ryan Present on the Burn Outcomes Questionnaires (BOQ)

September 12th, 2014

Dr. Lewis Kazis

Dr. Lewis Kazis

Drs. Lewis Kazis, Principal Investigator, and Colleen Ryan, co-investigator of the LIBRE project, presented at the Kaiser Permanente Population Health Strategy Webinar on August 28, 2014. Their presentation highlighted some of the excellent work they have done over the past decade to improve the care received by burn survivors.

Drs. Kazis and Ryan spoke about the Burn Outcomes Questionnaires (BOQ) they developed to track the physical, emotional, and social recovery of children and young adults with burn injuries.  The results from this survey provide feedback to the burn survivor, their family and their clinicians on the progress of the burn survivor’s recovery.

Dr. Colleen Ryan

Dr. Colleen Ryan

A burn survivor’s results on the survey can be compared to burn survivors similar to themselves to see how they are doing on their path to recovery. This helps clinicians focus on areas where a burn survivor may be having more trouble in order to improve the quality of care and quality of life of the burn survivor.

The BOQ surveys, discussed in this presentation, have laid the ground work for what the LIBRE project is now developing for adult burn survivors.  Use the links below to watch the presentation or to view the presentation slides.

The presentation will also be archived on our Publications & Presentations page.

Watch the Webinar

To watch the full webinar presentation, click here.  Use the time bar at the bottom of the webinar to skip the introductions and go right to the presentation:

  • 09:28: Dr. Kazis -  using the BOQ with children and clinical trials
  • 27:40: Dr. Ryan - using the BOQ with young adults and clinical applications

View the Presentation Slides

Kaiser Premanente Presentation Slides