2013 Research Institute Annual Report
Transcription
2013 Research Institute Annual Report
Re b e c ca D . C o nsi d i ne Researc h Insti tute > 2013 Annual Report Why not? Table of contents From our founders From our director 4 6 Can a small device do big things? Can we solve the unsolvable? 8 12 How can we collaborate to define – and measure – quality? Is there a better way to sustain our sickest patients? Making an impact 16 20 24 Center for Nursing Research 30 Stay up-to-date on the research activities at Akron Children’s and the Rebecca D. Considine Research Institute by signing up for Research Pursuits, our monthly e-newsletter. Visit akronchildrens.org/pursuitssignup to subscribe. From our founders Dear Friends, There’s one question that parents know all too well: “Why?” Whether it’s about the color of the sky or the reason for eating broccoli, “why?” expresses the curiosity of a child. But for an ill or injured child, trying to find answers can be difficult. Sometimes, we don’t know the reason behind a disease or illness. That’s why, in 2009, we established the Rebecca D. Considine Research Institute – to support the work in finding answers to childhood diseases’ toughest questions while embodying the spirit of discovery and innovation at Akron Children’s Hospital. The institute channels the curiosity of our physicians, nurses and staff into innovative breakthroughs in pediatric healthcare. Through their work, we’ve taken our patients’ question to the next level: “Why not?” Why not find a better way to feed a critically ill child on a ventilator? Why not investigate new therapies that could help treat untreatable illnesses? Why not bring the latest advancements in medical technology to Akron Children’s? In this report, you’ll learn how we’re working to find answers to these questions, and more, as investigators take their knowledge from the research bench to the bedside, demonstrating our hospital’s unfailing commitment to providing exceptional care through pediatric clinical, translational and outcomes research. Discover the many impressive milestones we reached in 2013, and learn how research is shaping the way we approach patient care. 4 It’s an honor to be a part of the Rebecca D. Considine Research Institute. We’re thankful for all our investigators who aren’t satisfied with what “is” and staunchly pursue what “could be” to improve the lives of infants, children and teens in our region and beyond. Sincerely, Rebecca D. Considine William H. Considine President and CEO, Akron Children’s Hospital 5 From our director Dear Friends, When Akron Children’s physicians, nurses and staff ask “why?” or “why not?” they frequently search for answers through research. In this annual report, we illustrate the notable accomplishments achieved by Akron Children’s Hospital’s investigators supported by the Rebecca D. Considine Research Institute in 2013. We profile four investigators seeking to discover new treatments and methods that aim to improve patient care. They are four of many throughout the Akron Children’s system who share the same zeal to advance pediatric healthcare and outcomes – asking and finding answers to some of our toughest questions. Rigorous clinical research begins with a vision. Discovering answers requires determination, tenacity and teamwork. The Rebecca D. Considine Research Institute provides the infrastructure to support Akron Children’s investigators. Having expertise in core research disciplines, our professional staff collaborates with hospital investigators to overcome the challenges of pediatric clinical research. When investigators in any discipline ask “why?” research institute specialists join their team to advance the project – be it with study design, biostatistics, database design and management, medical communications, contracting, budgeting or grant administration. Our skilled research nurses and study coordinators work directly with investigators, patients and their families to ensure that Akron Children’s studies are well-managed, safe and adhere to the high ethical standards our study participants deserve. 6 We’re encouraged by the culture of innovation that’s fostered at Akron Children’s Hospital and inspired by the contributions made by the children and families who are willing to participate in our research programs. It’s through their courage and determination that we’re achieving our mission: discovering answers to questions that spur significant progress in improving pediatric healthcare for all. Sincerely, Michael Reed, PharmD, FCCP, FCP Director, Rebecca D. Considine Research Institute 7 8 Can a small device do big things? New study could revolutionize how to measure intracranial pressure Researchers at Akron Children’s Hospital’s Rebecca D. Considine Research Institute have developed a reputation for seeking advancements in the care of babies, children and teens. “One of the most important missions of our institution is to provide the highest-quality care,” says Michael Reed, PharmD, FCCP, FCP, director of the Rebecca D. Considine Research Institute. “We can’t stay at the forefront of high-quality care without researching new approaches in delivering it to our patients.” “One of the most important missions This includes exploring new medical devices that have potential to improve pediatric care and outcomes. Through its current investigation, the research institute is partnering with Akron Children’s pediatric intensive care unit (PICU) and division of neurosurgery to test and study a new device that could revolutionize how to treat, monitor and care for children who have experienced a traumatic brain injury. highest-quality care. We can’t stay It’s called the HeadSense HS-1000, and it was developed by Israeli company HeadSense Medical Ltd. The device offers a non-invasive way to measure intracranial pressure (ICP), which is monitored to diagnose, manage and provide follow-up care to patients with neurological conditions. delivering it to our patients.” of our institution is to provide the at the forefront of high-quality care without researching new approaches in “Monitoring ICP is extremely important for patients who’ve suffered from a traumatic brain injury or stroke, or underwent brain surgery,” says James Besunder, DO, director of the division of pediatric critical care and medical director of the PICU. “These patients have better outcomes if we can maintain their pressure below a certain level.” The current method used to measure ICP is highly invasive, painful and expensive. It requires neurosurgeons to drill a hole in a patient’s skull and surgically insert an intraventricular catheter into the child’s brain, which is then used to measure ICP. “We wanted to find a new way for physicians to monitor ICP non-invasively,” says Guy Weinberg, CEO of HeadSense Medical. “We saw an opportunity to equip them with a tool that would enable better patient management and clinical diagnoses, while reducing the level of discomfort to the patient.” 9 Measuring intracranial pressure HeadSense HS-1000 is designed to monitor ICP acoustically via ear buds placed in the patient’s ears. A low-frequency acoustic signal is generated for a few seconds in one of the ear buds and picked up on the opposite side. The acoustic data is then analyzed using signal processing algorithms. In a matter of seconds, the patient’s ICP level is available. The procedure can be repeated automatically for continuous monitoring. “If we’re able to replace the need for a neurosurgeon to insert an invasive device – avoiding the risks and expenses – it would exponentially impact the way we deliver care,” says Dr. Reed. “However, the only way to understand its effectiveness is to study it.” Heading a multi-site study This summer, Akron Children’s will be leading a multi-site study to test the new device involving three major pediatric hospitals. The study will be conducted under the oversight of principal investigators Dr. Reed and Michael Forbes, MD, FAAP, director of clinical research and outcomes analysis in Akron Children’s PICU, who together designed the study and wrote its protocol. Roger Hudgins, MD, director of the division of neurosurgery, also contributed to the study design and is a key collaborator on the team directing it. “Clinical research plays an important role in the PICU and critical care medicine,” says Dr. Besunder. “You cannot optimize safe and quality care for children in either setting without including clinical research as one of your building blocks. That’s why studies like this are vital to our operation.” In the study, investigators will measure ICP in PICU patients ages 2 to 18, who already have the standard catheter device in place, via two methods: the HeadSense device and the current standard process. Simultaneous ICP measurements will be taken, outcomes will be compared and findings will be reported into a secure database. The research institute will be responsible for pooling the data and analyzing it on a real-time basis. The study is expected to last 12 to 18 months. It will mark the first time the product is tested in the U.S., and Dr. Reed notes that it’s a prestigious vote of confidence that the Israeli manufacturer is working with Akron Children’s. 10 “We always look to collaborate with key opinion leaders and experts who can help us validate the technology we’re bringing to the market for the first time,” says Weinberg. “Dr. Reed, his team at the research institute and the other Akron Children’s investigators are these opinion leaders. Each is well-known and respected in their respective areas of expertise.” Identifying the potential to expand care Because the insertion of the standard ICP device is so invasive and can bring complications, there may be additional patients with trauma who could benefit from the HeadSense device if the outcomes of the initial investigations are successful. One potential area is sports medicine, where Joseph Congeni, MD, director of sports medicine, will be conducting an investigation to see if the HeadSense HS-1000 could be used in monitoring patients who experience concussions. It’s another reason why studying this device is so important. If it’s viable, it’s highly likely that it will both reduce the use of standard measurement methods and allow doctors to measure ICP in other children where it was previously unable to be measured. Find out more about the latest news and achievements in the Rebecca D. Considine Research Institute. Scan the code or visit http://bit.ly/1qZKy1C. “We’re leading the way to continuously improve the care we provide to sick children,” says Dr. Reed. “If this new device is viable, we’ll take the care of patients with brain injury to the next level.” 11 12 Can we solve the unsolvable? Improving the outlook for mitochondrial diseases According to the United Mitochondrial Disease Foundation, each year 1,000 to 4,000 children in the United States are born with a mitochondrial disease. The problem is, there are hundreds of mitochondrial diseases – some that appear in infancy, others that don’t appear until as late as age 70. The variable nature of mitochondrial diseases makes them difficult to diagnose and especially challenging to treat. Researchers like Bruce H. Cohen, MD, FAAN, are working to find adequate treatments and define outcomes for mitochondrial disease patients across the country. “In comparison to defining outcomes for mitochondrial diseases, it’s actually easier to define outcomes for issues like brain tumors,” says Dr. Cohen, director of pediatric neurology at Akron Children’s NeuroDevelopmental Science Center (NDSC). “For some diseases, we can easily define the life expectancy – an example being a particular form of a childhood brain tumor with less than a 10 percent survival rate at two years after diagnosis. We don’t have measures like this with mitochondrial diseases, because they vary in onset, symptom, inactivity and so on.” Researchers also struggle to overcome another big obstacle – there have been no new mitochondrial disease medications to study in the last 30 years. “We’re thrilled with where we are now, but it’s still not good enough. That’s the quality of the human spirit – to make things better for those who are suffering from terrible disorders.” “Luckily, drug companies have begun pushing to solve the mitochondrial disease conundrum because other more common diseases like diabetes, Alzheimer’s, Parkinson’s, Lou Gehrig’s Disease – and even some cancers – have been linked to mitochondrial function,” says Dr. Cohen. What do mitochondria do? Almost all cells in the body have mitochondria, which are tiny “power plants” that produce a body’s essential energy. When patients have a mitochondrial disease, their mitochondria don’t convert enough food and oxygen into energy. Instead, they make an excess of toxic byproducts. 13 Mitochondrial Disease “Mitochondria are to the cell of the body what a car engine is to the car itself,” says Dr. Cohen. “An engine generates energy by burning gasoline but also generates heat and a physical banging force, resulting in the destruction of the engine over time, plus unburned fuel products. Mitochondria are similar, because the toxic byproducts destroy DNA and rip apart the integrity of the cell.” Common symptoms of mitochondrial diseases include vision and/or hearing loss, muscle control issues, movement disorders, seizures, dementia and epilepsy, a slow heart rate and more. One of these symptoms alone doesn’t mean a patient has mitochondrial disease. Rather, Dr. Cohen sees patients who’ve experienced an evolution of symptoms over time. Perhaps they have a seizure and then notice hearing loss, fatigue and other symptoms. Physicians from across the country refer patients – both children and adults – to see Dr. Cohen. “A mitochondrial patient’s primary doctor should be either his family doctor or pediatrician, as their specialty is treating the patient holistically,” says Dr. Cohen. “I want to come alongside the primary doctor and work with them to prescribe the best course of treatment.” Small cell components – Large-scale research Akron Children’s Hospital is one of 18 mitochondrial centers across America researching treatment options through the North American Mitochondrial Disease Consortium. The consortium referred Dr. Cohen to the hospital three years ago and partially funds two of his current investigations into mitochondrial function and dystonia. “One of the reasons I came to Akron Children’s was because of what Dr. Michael Reed established with the Rebecca D. Considine Research Institute,” says Dr. Cohen. “He provides the infrastructure to get the project off the ground and completed.” Dr. Cohen’s studies revolve around a medication called EPI-743 for children with Leigh Syndrome, one of the more fatal forms of mitochondrial disease. EPI-743 helps stimulate inactive (or oxidized) glutathione – an important antioxidant in our bodies that detoxifies harmful substances produced in mitochondrial diseases. 14 Participants receive six months of placebo or EPI-743, followed by reevaluation and another six months of monitoring. In total, patients are tracked for a two-year period using verified scales to define outcome measures. The research institute’s Hilary Tonni, MSE, BSN, RN, CCRC, a clinical research nurse, assists Dr. Cohen by enrolling patients, monitoring their visits and following medication compliance. Akron Children’s is second in terms of the number of patients entered into the consortium for study. The reputation of research While there is still plenty of work to do, mitochondrial disease research has come a long way in the last 30 to 40 years. “We’re thrilled with where we are now, but it’s still not good enough,” says Dr. Cohen. “That’s the quality of the human spirit – to make things better for those who are suffering from terrible disorders.” The goal is to find one medication or a set of medications or treatments to improve mitochondrial function and ultimately alleviate debilitating symptoms. And a continued partnership with the Rebecca D. Considine Research Institute helps Dr. Cohen get closer to reaching that goal. “Our institution is making its best efforts to hire people who want to do clinical research,” says Dr. Cohen. “Akron Children’s has delivered on its promise to be the premier medical center for children in northern Ohio, but we want to have a more global impact and will continue to push the envelope through research initiatives.” Learn more about Dr. Cohen’s work as he investigates new treatment options for mitochondrial disease. Scan the code or visit http://bit.ly/1hL1adE. 15 How can we collaborate to define – and measure – quality? Forming consensus guidelines for quality metrics in neonatal and pediatric critical care transport Each year, more than 200,000 neonatal and pediatric patients across the U.S. are transported from one medical facility to another to receive more specialized care. During transport, the care that these patients receive can impact outcomes – from mortality rates to unplanned events. While information and performance metrics are readily available about pediatric emergency and critical care in a hospital setting, there’s remarkably little data on the care provided during patient transfer from community hospital centers to larger hospitals. “Critical care transport medicine touches a huge number of patients,” says Michael Bigham, MD, FAAP, medical director of transport services at Akron Children’s Hospital. “The critical care team at Akron Children’s transports approximately 2,500 patients annually. And these numbers are growing rapidly.” Dr. Bigham notes that neonatal and pediatric critical care transport involves much more than picking up a child at a community location or hospital and taking the child to the regional pediatric hospital. “Children face different factors than adults, and there are a lot of time-sensitive issues unique to the younger patient population,” says Dr. Bigham. Finding a way to consistently measure performance in neonatal and pediatric critical care transport has been a longtime goal for Dr. Bigham and his colleague, Hamilton Schwartz, MD, medical director of Cincinnati Children’s Hospital’s pediatric transport program. “There’s a void of scientific expertise and understanding about how we can optimize this particular branch of care,” says Dr. Bigham. “This led Dr. Schwartz and I to begin brainstorming a way that allows consistent measurement of performance for pediatric neonatal and critical care transport teams. If we aren’t engaged in the investigations that help us make these stair-step discoveries and improvements over time in the care we deliver, then we’ll never achieve anything new.” 16 “If we aren’t engaged in the investigations that help us make these stair-step discoveries and improvements over time in the care we deliver, then we’ll never achieve anything new.” 17 Neonatal and pediatric critical care transport Their efforts led to the formation of the Ohio Pediatric/Neonatal Transport Quality Collaborative in 2011. Comprised of transport services representatives from Akron Children’s Hospital, Cincinnati Children’s Hospital, Cleveland Clinic, Dayton’s Children’s Hospital, Nationwide Children’s Hospital, and Rainbow Babies and Children’s Hospital, the collaborative set out to develop guidelines for neonatal and pediatric transport quality metrics that could be used throughout Ohio. “By comparing how everyone is doing – using the exact same definitions and the exact same language – we can define the appropriate transport success rates and performance metrics,” says Dr. Bigham. Creating metrics, establishing consensus In June 2011, representatives from each hospital – including physicians, nurses, respiratory therapists, EMTs and nurse practitioners – gathered in Columbus, Ohio, for a three-day conference. Together, they aimed to achieve consensus on quality metrics that may create best practices and educational priorities in the hospitals’ training programs. “The first phase in our work was brought to reality through funding from the Rebecca D. Considine Research Institute, Cincinnati Children’s Hospital and the goodwill of the other participating collaborative members,” says Dr. Bigham. Employing a consensus methodology known as Nominal Group Technique (NGT), the group considered 257 metrics using four information sources: 1) the published scientific literature (which was gathered for the collaborative by an evidence and measures expert); 2) existing metrics; 3) published standards; and 4) conceptually important metrics. Their goal was to define 18 to 24 quality metrics that could be grouped by the Institute of Medicine’s six domains of quality: effectiveness, efficiency, safety, family/patient centeredness, timeliness and equity. Through the guidance of an NGT facilitator, the group reviewed, contemplated and discussed the presented data in a round-robin fashion. 18 “As we examined each metric, we encouraged the team to vet it through the National Quality Forum’s criteria for assessing quality measurements,” says Dr. Bigham. “We needed to filter each one by asking: Is it important? Is it scientifically acceptable? Is it usable? Is it feasible?” Dr. Bigham notes that they also used the Donabedian model, which frames quality across three categories – structure, process and outcomes. “While outcomes are important, this model focuses instead on ensuring that people have the right tools and are putting the right processes in place to achieve the right outcomes,” says Dr. Bigham. At the end of the session, the 19 participants “tore down” hundreds of possibilities to 23 quality metrics that they deemed most important in neonatal and pediatric critical care transport, including intubation success rate, family presence during transport, unplanned neonatal hypothermia and intravenous infiltration. “Now we had the metrics defined,” says Dr. Bigham. “Our next step was to begin tracking them.” Looking forward Since 2011, the outcome of the collaborative’s conference has been presented in abstract form and published in multiple critical care transport and pediatric critical care venues, including the esteemed journal Pediatric Critical Care Medicine. Each hospital has been tracking the agreed-upon metrics, including new collaborative member Kentucky Children’s Hospital. “We’re very excited in how our Ohio project is taking shape,” says Dr. Bigham. “We’re now working together to determine goals for each metric and investigate best practices. It’s essential that we create a structure around those best practices, as they’ll eventually be disseminated to the rest of the collaborative.” In 2012, Dr. Bigham and Dr. Schwartz had the opportunity to broaden the scope of the process and achieve national quality metrics when they hosted a quality summit at the National Conference & Exhibition of the American Academy of Pediatrics’ (AAP) Section on Transport Medicine. “With the 125 participants, we aimed to identify the most important transport metrics using another consensus methodology called Delphi,” says Dr. Bigham. “Using the same long list of candidate metrics that we used in the Ohio study, we narrowed it to a more refined list of 12 metrics that they agreed were the most important nationally. The participants are beginning to track that data, as well.” Dr. Bigham notes that there’s a lot of enthusiasm in the pediatric and adult transport industry around this methodology, and he’s led a Quality Summit mirroring the AAP’s project, which was sponsored by the Air Medical Physicians Association. Collectively, the quality projects have resulted in the development of the Ground and Air Medical Quality Transport (GAMUT) database, which currently serves as the central location for data collection. Dr. Bigham hopes to gain extramural funding to optimize the database and fund the many quality improvement opportunities that will be identified through the centralized quality measurement and benchmarking at the GAMUT database. “This year, our largest goal is to gain large-scale funding to support the infrastructure for tracking the neonatal, pediatric and adult metrics,” says Dr. Bigham. Watch Dr. Bigham discuss his work in defining quality transport standards. Scan the code or visit http://bit.ly/1m7gFi3. 19 Is there a better way to sustain our sickest patients? Defining best practices for delivering enteral nutrition to critically ill ventilated children Proper nutrition plays a crucial role in the care and treatment of a critically ill child. It holds the potential to decrease risks like mortality, hospital-acquired infection and prolonged hospitalization when that child is admitted to a pediatric intensive care unit (PICU). But does the way in which nutrition is delivered play a role in outcomes, as well? That’s the question Ann-Marie Brown, PhD, CPNP-AC/PC, CCRN, FCCM, hopes to answer through her latest investigation, “Comparison of Two Gastric Feeding Methods in Mechanically Ventilated Critically Ill Children.” Brown is the lead nurse practitioner in Akron Children’s Hospital’s PICU and chair of the Advanced Practice Providers Education Committee. She also is one of the most prolific researchers in the hospital’s Center for Nursing Research. “My passion and personal mission is translating research to the bedside,” says Brown. “One of my greatest interests is understanding the best way to deliver nutrition to our children. We know the importance of it, but there are barriers. I’m looking to define best practices in the delivery of enteral nutrition to critically ill ventilated children.” “What we know is not static,” Brown observes. “Our dedication to research ensures Akron Children’s will continue to be an organization of excellence in the care of the children entrusted to us.” Questioning the status quo In her current investigation, which was her doctoral dissertation topic, Brown takes a hard look at the strengths and weaknesses of enteral nutrition protocols for patients on ventilators – comparing the standard practice of continuous delivery with a bolus, or intermittent, feeding regimen. 20 “What we know is not static. Our dedication to research ensures Akron Children’s will continue to be an organization of excellence in the care of the children entrusted to us.” 21 Delivering enteral nutrition In enteral feeding, the prescribed nutritional requirements are delivered in a fluid to the patient’s stomach through a nasogastric tube. The greatest risk is aspiration. If that happens, feeding has to be stopped, at least temporarily, increasing the risk of malnutrition. It is estimated that more than 30 percent of children admitted to PICUs are malnourished and could develop new or worsened malnutrition, increasing their risk of developing other illnesses, infections or worse. “Traditionally, it’s been assumed that continuously dripping feedings into patients’ bellies is the best way to deliver nutrition, because slow and steady makes it less likely for them to be intolerant,” says Brown. Intermittent feeding, however, may better mimic the way the stomach is designed to be fed. Simply put, it has the potential to provide better nutrition with fewer complications. “My primary goal will be to see if there’s a difference in the time it took to achieve the patient’s feeding goal,” says Brown. “I’ll also examine the number of times they experienced feeding intolerance and compare the intake amounts that the groups achieve each day compared to their target intake.” Patients enrolled in Brown’s investigation are between the ages of 1 month to 12 years who are currently on a ventilator and being fed through a nasogastric tube. They’re placed into either the continuous or intermittent feeding group, and data is collected for four days on each child. Brown began the enrollment process in October 2013, and she completed the data collection and statistical data analysis phases in the spring of 2014. Brown defended her findings for her doctoral dissertation in June. Fostering a love of clinical research Although Brown’s primary research interest is nutrition in critically ill children, she has also conducted investigations focusing on pediatric rapid response systems and deep vein thrombosis. But for Brown, it always comes back to nutrition. In her first investigation in 2004, she and her colleagues noticed a lot of variability in the gastric feeding practices in the PICU. So she worked with an interdisciplinary team of dietitians, nurses and physicians to develop a nasogastric feeding protocol. The result of that investigation was better, more consistent feeding practices. It also was when she discovered her love of clinical research. 22 “I knew this was a path I wanted to take, but I definitely needed to advance my research methodology skill set,” says Brown. “After the three years it took to complete my original project, I decided to enroll in the doctoral program.” Gaining key support To help fund her current investigation, Brown was awarded a research grant from The University of Akron’s Delta Omega Chapter of Sigma Theta Tau International, an international nursing honor society she has been a member of since 1985. The Rebecca D. Considine Research Institute designed and maintains the database Brown used to collect and store study data. Following study completion, Brown plans to finish her dissertation and hopes to publish two or three journal articles based on her findings. She notes that the backing she receives from the hospital has been essential to her ability to perform clinical research. “While this is uniquely my dissertation project, gathering the data I need to support it and completing my doctoral degree in general wouldn’t have been possible without the enthusiastic support of the hospital, the PICU doctors, nurse practitioners, dietitians and nurses, as well as the support of the Rebecca D. Considine Research Institute.” Discover more about Ann-Marie Brown’s investigations in nutrition in critically ill infants and children. Scan the code or visit http://bit.ly/1p9EUym. 23 Making an impact From the number of studies to new collaborations, 2013 marked a year of growth and advancement for the Rebecca D. Considine Research Institute. Hospital investigators published in 70 peer-reviewed journals Rebecca D. Considine Research Institute staff Michael D. Reed, PharmD, FCCP, FCP Research Institute Director Kelly Culp, BSN, RN Clinical Research Nurse Ellen Minnozzi Regulatory Document Specialist Aris Eliades, PhD, RN, CNS Research Institute Associate Director and Director of Nursing Research Victoria Drummond Department Secretary Tonia Polanski, BSN, RN, CPN Clinical Research Nurse Debbie Giebner Regulatory Document Specialist Monica Swank, CMA, CCRC Clinical Research Coordinator Eloise Lemon, BSN, RN, CCRA, CCRC Administrative Director Clinical Services Hilary Tonni, MSE, BSN, RN, CCRC Clinical Research Nurse Roseann Marsico, BA Research Grant Coordinator William Van Nostran, BS Medical Communications Specialist Maryan Mathis, MS, RN-BC, CCRC Administrative Director, Contracts and Development Donald Wachsberger, MS Database Manager Neil McNinch, MS, RN Biostatistician Diane Wolski, BSN, RN Research Clinical Coordinator Kristine Allmendinger-Goertz, BA Research Study Coordinator Ale’ce Andrew, BS Research Assistant Heather Anthony, RN Clinical Research Nurse Mira Brown, MS Biostatistician 24 2013 Research Funding – External Grants Representative sampling of significant grant funding research in selected pediatric specialties. Division of Clinical Pharmacology and Toxicology Acetaminophen Toxicity Biomarkers SPONSORS: Arkansas Children’s Hospital Research Institute, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Understudied U Drugs for Children SPONSORS: Duke University Clinical Research Institute Pediatric Trials Network, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Clindamycin in Overweight/ Obese Children SPONSORS: Duke University Clinical Research Institute Pediatric Trials Network, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Akron Children’s Lewis H. Walker, MD, Cystic Fibrosis Center Fibrosing Colonopathy in Cystic Fibrosis SPONSORS: Seattle Children’s Research Institute, Cystic Fibrosis Foundation Therapeutics Inc. Akron Children’s Pediatric Intensive Care Unit (PICU) Akron Children’s NeuroDevelopmental Science Center Seizure Disorder Study SPONSORS: The Hospital for Sick Children, Pediatric Epilepsy Research Foundation (PERF) Infection in Pediatric Stroke SPONSORS: The Regents of the University of California, National Institute of Neurological Disorders and Stroke (NINDS) Preventing Migraines in Children SPONSORS: Pediatric Septic Shock National Institutes of Health (NIH), Cincinnati Children’s Hospital Akron Children’s Vision Center Sepsis PRevalence OUtcomes & Therapies (“SPROUT”) SPONSORS: National Institutes of Health (NIH), Cincinnati Children's Hospital SPONSOR: Children’s Hospital of Philadelphia Akron Children’s Center for Diabetes and Endocrinology SPONSORS: Topical Solution to Treat Nystagmus SPONSOR: The Vision of Children Type 1 Diabetes TrialNet University of South Florida, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) 25 25 eviated titles. 2013Research Research Funding Funding –– Akron Akron Children's Children's Hospital 2013 Hospital Research Research Foundation FoundationAwards Awards The Akron Children’s Hospital Research Foundation awarded $131,637 to fund 11 studies. The Akron Children’s Hospital Research Foundation awarded $131,637 to fund 11 studies. Akron Children’s Akron Children’s Emergency Services Emergency Services Anatomical Effect of Early E Treatment Room E Anatomical Application of A Effect of Early Model: Impact Tapeofon Ki Treatment Room Application AKinesio on Critical Ankle Model: Impact Ki AcuteTape Kinesio on Resuscitation Sprains on Critical Acute Ankle Resuscitation Sprains INVESTIGATORS: Leslie Burton, DO INVESTIGATORS: Mary Patterson, MD Leslie Burton, DO Osama El-Assal, MD Mary Patterson, MD Osama El-Assal, MD $7,250 $7,250 INVESTIGATORS: Zaid Khatib, MD INVESTIGATORS: Nirali Patel, MD Zaid Khatib, MD Michelle Burke, MD Nirali Patel, MD Cortney Myer, MD Michelle Burke, MD Cortney Myer, MD $2,788 Intubation Best Practices in Intubation Best Specialty Practices in Transport Specialty Transport Objectifying Pupillary Light Objectifying Exam in Pupillary Light Critically Ill Exam in Children Critically Ill Children INVESTIGATORS: INVESTIGATORS: Michael T. Bigham, MD Melissa Walter, MSN, RN, Amee M. Bigelow, MD CPNP, AC-PC, CPEN INVESTIGATORS: INVESTIGATORS: Michael Forbes, MD Michael T. Bigham, MD Melissa Walter, MSN, RN, $3,300 Amee M. Bigelow, MD CPNP, AC-PC, CPEN $6,935 Michael Forbes, MD 26 Emotional, Developmental Emotional, and Behavioral Developmental Issues in Rural and Behavioral and Urban Issues in Rural Children and Urban Children Electronic Screen Use in Children Age Electronic Screen 12in– Children 36 Months: Use Age Relationship to 12 – 36 Months: Social/Emotional Relationship to Skills Social/Emotional INVESTIGATOR: INVESTIGATOR: INVESTIGATOR: INVESTIGATOR: $15,000 $14,776 Diane Langkamp, MD Diane Langkamp, MD $15,000 Akron Children’s Division Akron Children’s Division of Pediatric Psychiatry of Pediatric Psychiatry and Psychology and Psychology Akron Children’s Akron Children’s NeuroDevelopmental NeuroDevelopmental Science Center Science Center Triple P Outcomes Triple P Study Outcomes Study Child/Parent Psychosocial Child/Parent Functioning Psychosocial After Sport Functioning Related After Head Sport Injury Head Related Injury Skills Sajani Raman, MD Sajani Raman, MD $14,776 INVESTIGATORS: Elissa Deggelman, PhD INVESTIGATORS: Geoffrey Putt, PsyD Elissa Deggelman, PhD Geoffrey Putt, PsyD $10,519 $10,519 INVESTIGATOR: Roger Hudgins, MD INVESTIGATOR: Roger Hudgins, MD $20,500 $20,500 $2,788 Akron Children’s Pediatric Intensive Care Unit (PICU) Akron Children’s Pediatric Intensive Care Unit (PICU) $3,300 Akron Children’s Akron Children’s Developmental-Behavioral Developmental-Behavioral Pediatrics Pediatrics $6,935 Akron Children’s Department of Pediatrics Akron Children’s Department of Pediatrics Oral Health Perspectives Among Refugee Oral Health Mothers with Perspectives Pre-School Among Refugee Children Mothers with Pre-School Children Akron Children’s Division of Pediatric Pulmonary Medicine Akron Children’s Division of and Akron Children’s Pediatric Pulmonary Medicine NeuroDevelopmental Science and Akron Children’s Center NeuroDevelopmental Science Center Exercise Intolerance in Exercise Mitochondrial Intolerance Myopathy in Mitochondrial Patients Myopathy Patients INVESTIGATORS: INVESTIGATORS: INVESTIGATORS: INVESTIGATORS: Lance A. Jepson, DO Joel Davidson, MD Rajeev Bhatia, MD Bruce Cohen, MD Lance A. Jepson, DO $7,600 Joel Davidson, MD Rajeev Bhatia, MD $14,969 Bruce Cohen, MD $7,600 $14,969 Akron Children’s Vision Children’s Center Akron Vision Center New Amblyopia Treatment in New Amblyopia Children Pilot Treatment in Study Children Pilot Study INVESTIGATORS: Richard Hertle, MD Dongsheng Yang, PhD, MD INVESTIGATORS: Richard Hertle, MD $28,000 Dongsheng Yang, PhD, MD $28,000 eviated titles. eviated titles. Learning to innovate To improve patient care and outcomes, the research institute offers a variety of educational opportunities that encourage innovation and are creatively tailored to meet the needs of clinician investigators and others, including college students aspiring to careers in healthcare. Research Methodology Seminar Series Summer Pediatric Research Scholars (SPRS) 2013 Translational Science Seminar Series A series of monthly classroom sessions focusing on statistical research methods for investigators with limited training in statistics. In 2013, 11 college students conducted a research study during 10 intensive weeks. Mentored by an experienced hospital investigator, students also benefited from a variety of formal and informal learning opportunities throughout the hospital. Three Akron Children’s investigators and four guest speakers from academic institutions spoke at this lecture series. Presentations by outside experts stimulated Akron Children’s investigators to form collaborative relationships to leverage resources and expertise. Since its inception in 2006, 88 college students have completed the SPRS program, earning a stipend toward their tuition or expenses. Fellows Medical Writing Seminars Three one-hour medical writing seminars were presented to fellows in collaboration with the medical education department. 27 Participating study site for multicenter pediatric research initiatives Children’s Oncology Group (COG) The division of pediatric hematology-oncology is a distinguished and highly engaged member of COG, the world’s largest childhood cancer research organization. Akron Children’s patients are continually enrolled in COG clinical trials. Staff physicians, nurses, pharmacists and others also are members of various COG leadership committees. 28 Cystic Fibrosis Foundation Akron Children’s Hospital is one of 72 therapeutic development research sites sponsored by the Cystic Fibrosis Foundation – making drugs and nutritional supplements under development available to patients in our Lewis H. Walker, MD, Cystic Fibrosis Center. Pediatric Trials Network (PTN) The research institute participates in the PTN, a national initiative providing infrastructure to study pediatric dosing and the safety of prescription medications. It’s a collaboration of the Eunice Kennedy Shriver National Institute of Child Health and Human Development and the Duke Clinical Research Institute. Research Pursuits is the institute’s digital newsletter for the pediatric research community, donors, community leaders, academia, friends and colleagues. Visit akronchildrens.org/pursuitssignup to subscribe. 2013 Akron Children’s Investigator Videos Investigating Head Injury and Concussion Management in Young Athletes Joseph Congeni, MD, director of sports medicine Bullying, Suicidality and Depression in Psychiatric Adolescent Inpatients Sumru Bilge-Johnson, MD, pediatric psychiatrist Leadership Behaviors and Rounding Influence to Safety Pam Baker, MSN, MBA, RN, PCNS-BC, associate chief nursing officer and chief nursing information officer Mitochondrial Disease Research Bruce H. Cohen, MD, FAAN, director of pediatric neurology Home-Based vs. Center-Based Intervention Marilyn Espe-Sherwindt, PhD, director of the Family Child Learning Center (FCLC) Using Epigenetics to Study Bone Tumors in Children and Adolescents Steven Kuerbitz, MD, director of divisional research and stem cell transplantation 29 grants Center for Nursing Research – 2013 accomplishments Oral or poster presentations at local, regional, national & international conferences Directed by Aris Eliades, PhD, RN, CNS, the center creates opportunities to improve family-centered care through advances in nursing clinical practice, administration and education. IRB-approved open studies as of December 31, 2013 Established a Nursing NursingResearch research Council awards and honors Ann-Marie Brown, PhD(c), CPNP-AC/PC, CCRN, FCCM •Fellow of Critical Care Medicine inductee, American College of Critical-Care Nurses •Delta Omega Chapter of Sigma Theta Tau Research Grant Nationally recognized Jennifer Huth, BSN,as RN,exemplary CPN Nominated Akron Children’s Magnet Nurse of program the Year in “New Knowledge, Innovations & 20,864 Aris Eliades, PhD, RN, CNS Northeast Ohio Nursing Initiative Legacy Award In research grants awarded to Akron Children’s nurses Improvements” category Phyllis Mesko, RN, CPN •First place in research category, International Conference for PeriAnaesthesia Nurses •American Society of PeriAnaesthesia Nurses Novice Research Grant Shannon Sikorski, RN, MSN, FNP-BC, CPHON Selected to attend Nurse Researcher Workshop, Alex’s Lemonade Stand sponsor Mellissa Walter, RN, MSN, CPNP, AC-PC Awarded research grant 30 12 master’s degree nursing students completed 720+ research practicum hours through the Center for Nursing Research 2 PhD nursing students conducted studies at Akron Children’s 3 Doctor of Nursing Practice students conducted studies at Akron Children’s Meghan Weese, MSN, RN, CPN Named to Ohio Organization for Nurse Executives 2013 Aspiring Nurse Leader “40 Under 40” Akron Children’s Hospital’s Nurse Scholar Program Akron Children’s Hospital designed the Nurse Scholar Program to further professional growth and development through a structured educational curriculum offering formal training in the field of pediatric research. Nurse Scholars then design and conduct a rigorous research study. 2013 – 2014 Nurse Scholars Nancy Delnay, RN, MSN, CNP Psychological problems of children with juvenile rheumatologic disease Jean Frisone, BSN, RN, CPN Variability of fever parameters and instructions to parents Kari Wahl, BSN, RN Identifying the source and prevalence of workplace incivility in a pediatric nursing workforce Melissa Walter, RN, MSN, CPNP, AC-PC Objectifying the pupillary light exam: The role of an automated pupillometer in critically ill children 31 One Perkins Square Akron, Ohio 44308-1062