LIBRE Profile

LIBRE Profile is an innovative system for measuring a return to life after burn injury.


Attempting to return to everyday life after a burn injury can be difficult, stressful, and emotionally challenging. While traditional rehabilitation strategies for burn survivors focus on physical recovery, Life Impact Burn Recovery Evaluation (LIBRE) Project focuses on the impact burn injuries have on social life.



LIBRE Profile is a computer-based questionnaire that can help burn survivors and clinicians track burn recovery, improve rehabilitation efforts, and identify areas where additional support is needed.


LIBRE

LIBRE Journey Study

The LIBRE Journey Study is developing social recovery trajectories using the LIBRE Profile questionnaire. These trajectories are similar to growth curves for kids and they will help burn survivors and their clinicians understand LIBRE Profile scores.

The LIBRE Journey Study aims to create social recovery trajectories for the LIBRE Profile questionnaire. Social recovery trajectories are similar to growth curves for kids and they allow social integration to be assessed over time. On a clinical level, established trajectories will promote resource planning and development, identify clinical care needs, and foster design and assessment of targeted interventions. They will also help burn survivors understand their LIBRE Profile scores and see how they are doing with social integration in comparison to others with a similar injury.

In this study, the LIBRE Profile will be administered at five time points over a 2 year period. Participants will be compensated with an Amazon gift card up to $100 in value.

Participants must be:

  • Over the age of 18; and
  • Have burns to ≥5% of their body or to hands, face, feet or genitalia.

If you are interested in participating, please contact us at:

(617) 952-6302

BostonHarvardBIMS@partners.org

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Preschool & School-Aged LIBRE Study

The Preschool and School-Aged LIBRE Study are developing a computer-based questionnaire to assess the impact of burn injury on child health. These studies will evaluate different health outcomes related to children’s physical and social recovery after a burn injury.

Dr. Colleen Ryan is currently researching burn injury outcomes in children up to the age of 12 through two studies: Preschool LIBRE and School-Aged LIBRE.

Both studies are developing a computer-based questionnaire to assess the impact of burn injury on child health. The Preschool LIBRE (1-5 years) and School-Aged LIBRE (5-12 years) will evaluate outcomes related to key aspects of child health and functioning such as physical, social, psychological, and family functioning. Once developed, the questionnaire will be used by parents of children with burns and their clinicians to track recovery and help improve rehabilitation and early intervention efforts.

Both studies are actively enrolling parents or legal guardians of children aged 1-12 with burn injuries. Participants will be compensated with a $15 e-gift card for their time.

In this study, the LIBRE Profile will be administered at five time points over a 2 year period. Participants will be compensated with an Amazon gift card up to $100 in value.

For more information or to enroll please contact:

Children aged 1-5 years:

Preschool LIBRE Info

(617) 371-4929

preschoolLIBRE@shrinenet.org

Children aged 5-12 years:

School-Aged LIBRE Info

(617) 371-4804

schoolagedLIBRE@shrinenet.org

The LIBRE Profile: Assessing Burn Survivors' Social Participation

The video describes why and how we created the LIBRE Profile, as well as how it will be used once it’s ready to be distributed to the burn community. Watch this short video, we hope you enjoy it!

Burn Model Systems National Longitudinal Database

BHBIMS is dedicated to contributing to the Burn Model Systems (BMS) National Database, a prospective, longitudinal, multicenter research study that examines functional and psychosocial outcomes following burns. The BMS National Database consists of data collected from almost 4,000 adults and over 2,000 children with moderate to severe burn injury. In collaboration with the three other NIDILRR-funded BMS sites, we aim to conduct rigorous long-term research that:

  • Leads to improved care and outcomes of individuals with severe burn injuries.
  • Contributes to evidence-based rehabilitation interventions and clinical practice guidelines for persons with severe burns.
  • Studies the longitudinal course and secondary effects of severe burn injuries.
  • Identifies and evaluates trends over time.
  • Establishes expected rehabilitation outcomes for burn survivors.
  • Facilitates other projects, including clinical trials and population-based studies.

Burn Model System Location Map

The other three BMS centers:

  • Northwest Regional Burn Model System: Seattle, Washington
  • Pediatric Burn Injury Rehabilitation Model System: Galveston, Texas
  • North Texas Burn Rehabilitation Model System: Dallas, Texas

We welcome the use of the BMS National Database by external researchers who share our goal of improving the lives of burn survivors. Please click here for details.

Visit the Burn Model System Data and Statistical Center website for more information.

To learn more, see our 2021 BMS National Database Facts and Figures:

2021 Burn Model System Summary Report

Instruments, Tools, & Guidelines

Heterotopic Ossification Risk Scoring System

Heterotopic Ossification is a rare but severely debilitating complication of burn injuries. We developed a risk scoring system that can be used to predict heterotopic ossification at the time of admission to the hospital.