News Briefs

Catherine Bollard named to Medicine Maker’s Annual Power List

Catherine Bollard

Children’s National Health System’s Chief of Allergy and Immunology, Catherine Bollard M.D., has been named to The Medicine Maker’s 2017 Power List, which honors the top 100 most influential people in the world of drug development. Dr. Bollard is featured as a ”Champion of Change,” a category that highlights experts striving to make the world a better place by getting medicines to those who need them the most. She joins notable scientists Frances Collins, director of the U.S. National Institutes of Health, and Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases.

In the Medicine Maker feature, Dr. Bollard describes the inspiration behind her dedication to cellular immunotherapy and how that led to her team’s breakthrough T-cell therapy that gives complete remissions in over 50 percent of some patient groups. Read the full piece here.

Sarah Mulkey receives NIH career development grant

Sarah Mulkey

Sarah B. Mulkey, M.D., Ph.D., a fetal-neonatal neurologist in the Division of Fetal and Translational Medicine at Children’s National Health System, has received a KL2 award from the Clinical and Translational Science Institute at Children’s National, which is funded through the National Institutes of Health. This grant, totaling $135,000 over two years, will allow Dr. Mulkey to reserve dedicated research time — apart from her clinical duties — to pursue a research project studying the autonomic nervous system in newborns.

Dr. Mulkey’s project will focus on developing a better understanding of this part of the nervous system — responsible for unconscious control of basic bodily functions, such as heart rate and breathing — in healthy, full-term babies, and how this system integrates with other brain regions responsible for mood and stress responses. Dr. Mulkey and colleagues then will compare these findings to those from babies whose autonomic nervous systems might have abnormal development, such as infants born pre-term or those with congenital heart defects or intrauterine growth restriction. The findings could help researchers develop new interventions to optimize autonomic nervous system development in vulnerable patients and improve long-term neurologic and psychological health in children.

“This award is an incredible opportunity for a young investigator since it provides protected time both for research and career development,” Dr. Mulkey says. “We need more clinicians in pediatric research to improve medical care and outcomes for children. This award makes it possible for me to devote significant time to research in order to contribute to new knowledge about babies throughout my career.”

To that end, NIH’s National Center for Advancing Translational Sciences has created a new LinkedIn page to highlight the innovative work of KL2 scholars.

Healthy Homes, Healthy Futures program receives national recognition

Clinton Foundation’s Health Matters Activation Summit in Little Rock, Arkansas

Children’s National expert Kofi Essel (far right) was one of the Children’s National physicians recognized as a health care pioneer at the Clinton Foundation’s Health Matters Activation Summit in Little Rock, Arkansas.

Children’s National Health System physicians were recognized as health care pioneers at the Clinton Foundation’s Health Matters Activation Summit in Little Rock, Arkansas, in early April for their creation of “Healthy Homes, Healthy Futures,” an obesity-centered home visitation curriculum for pediatric residents at Children’s National. The program received the first-ever Innovation Award for Health Care Provider Training and Education and was named the most innovative program for current health care professionals.

The award recognizes leading health professional training programs that promote nutrition, physical education and obesity counseling education to its students. Co-collaborators of the program include: Children’s National experts Kofi Essel, M.D., FAAP, Sirisha Yalamanchi, M.D., FAAP and Cara Lichtenstein, M.D., M.P.H., FAAP, as well as Erin Hysom, R.D.N., M.P.H., of the Maryland State Department of Education.

According to Dr. Essel, the team created the program to address the lack of knowledge providers have of the patient’s home and neighborhood environment, which is critical to understanding the barriers that families face when struggling with obesity.

Clinton Foundation's Innovation Award for Health Care Provider Training and Education award

Dr. Essel accepted the Innovation Award for Health Care Provider Training and Education on behalf of his team presented by former President Bill Clinton.

“Traditional medical training has been ineffective in equipping the next generation of providers with practical ways to manage or prevent obesity,” says Dr. Essel. “We created our program to address this issue and focus on the underlying sociocultural factors that are associated with obesity.”

To better equip providers, the program’s home visitation curriculum offers a unique approach to improve residents’ understanding of the social determinants of health, unpack how these underlying barriers can lead to obesity and strengthen critical goal-setting and obesity-management skills.

Dr. Essel and his team proudly accepted the award presented by former President Bill Clinton. Ultimately, Dr. Essel hopes to influence a national narrative around obesity, build empathy and reduce stigma toward families through immersion training, empower patients to improve their own health and help providers gain confidence in communicating about and managing obesity through the family context.

International cardiac surgery experts join Children’s National

Children’s National Health System is pleased to announce the addition of Can Yerebakan, M.D., and Karthik Ramakrishnan, M.D., to our team of pediatric cardiac surgeons.

Can YerebakanDr. Yerebakan comes to Children’s National from the prestigious Pediatric Heart Center in Giessen, Germany, where he was appointed as an Associate Professor of Cardiac Surgery at the Justus-Liebig-University and performed hybrid treatment of hypoplastic left heart syndrome (HLHS).  He was deeply involved in mechanical circulatory support and pediatric heart transplantation in Giessen – a leading center for pediatric heart transplantation in Europe. He also served as Chief of Clinical and Experimental Research in the Department of Congenital Cardiac Surgery at Justus-Liebig-University of Giessen, where he acquired several research grants and contributed to more than 20 abstract presentations at national and international meetings and 20 papers in peer-reviewed journals. . Dr. Yerebakan has published approximately 70 scientific papers with more than 160 impact points in three different languages. He is an active reviewer for journals such as the Journal of Thoracic and Cardiovascular Surgery, European Journal of Cardiothoracic Surgery and serves as assistant editor of the Interactive Cardiovascular and Thoracic Surgery journal and Multimedia Manual Cardiothoracic Surgery journal, both of which are official journals of the European Association of Cardiothoracic Surgery. He has had a distinguished academic career and is internationally recognized for his contributions to the field of congenital cardiac surgery, particularly in the treatment of HLHS and novel surgical treatments for heart failure in the pediatric population. Prior to his tenure at Pediatric Heart Center, Dr. Yerebakan completed his fellowship at Children’s in 2011.

Karthik RamakrishnanDr. Ramakrishnan joined Children’s National as a fellow in 2014 after completing his fellowship in congenital cardiac surgery at two major centers in Australia. After his two-year fellowship at Children’s, he joined the faculty. Dr. Ramakrishnan has extensive experience in managing children with congenital heart disease. Apart from routine open heart procedures, he has a special expertise in extracorporeal membrane oxygenation (ECMO) procedures and patent ductus arteriosus (PDA) ligation in extremely premature babies. He also has a keen interest in studying clinical outcomes after pediatric heart surgery. His research projects have included analysis of the United Network of Organ Sharing (UNOS) and the Pediatric Health Information System® (PHIS) databases, and his research has resulted in numerous presentations at national and international meetings. Dr. Ramakrishnan is currently the principal investigator at Children’s National for the Pediatric Heart Transplant Study (PHTS) group and the study coordinator for the Congenital Heart Surgeons’ Society (CHSS) studies. He also is a member of the PHTS working group on the surveillance and diagnosis of cellular rejection, and his clinical studies have resulted in several publications in top peer-reviewed journals.

Drs. Yerebakan and Ramakrishanan join Richard Jonas, M.D., Co-director of Children’s National Heart Institute and Chief of Cardiac Surgery, and Pranava Sinha, M.D., on the Cardiac Surgery attending staff.  We look forward to continuing to strengthen our program with the addition of these physicians.

Mary Ottolini receives COMSEP Achievement Award

Mary Ottolini

Mary Ottolini, M.D., M.P.H., M.Ed., vice chair of medical education at Children’s National Health System and professor of pediatrics at The George Washington University, recently received the Council on Medical Student Education in Pediatrics (COMSEP) Achievement Award during the group’s annual meeting in Portland, Oregon. This prestigious award is given to a current or former COMSEP member who has made major contributions to the organization and its members.

Since joining the organization in 2000, Dr. Ottolini has become a leader in the COMSEP Education Technology task force, a mentor to medical students, a teacher in clinical settings and an education innovator. Currently, Dr. Ottolini’s work with COMSEP is focused on overturning a Centers for Medicare & Medicaid Services regulation that bars medical students from documenting in the medical record, which interferes with their progress to becoming physicians. She continues to uphold the educational mission of Children’s National in caring for children by training the pediatric experts of tomorrow.

Children’s sponsors medical and health app development workshop

Hackathon Winners

Team 10, also known as “The BabyDaddies,” won the hackathon for their presentation on BabyData: A medical app for neonatal care providers. Team members, from left to right, are Jessica Castillo, Mohammed Abu-Rub, Saud Aljuhani and Jessica Herstek.

The Clinical and Translational Science Institute at Children’s National (CTSI-CN) recently sponsored a Medical and Health App Development Workshop in collaboration with The George Washington University (GW). Kevin Cleary, Ph.D., technical director of the Bioengineering Initiative at Children’s National Health System, and Sean Cleary, Ph.D., M.P.H., associate professor in epidemiology and biostatistics at GW, created this event to provide an interactive learning experience for those interested in developing medical and health software applications.

Not your average workshop, attendees had the opportunity to network, gain expert knowledge and participate in a group contest for a chance to win up to $10,000 in funding toward prototype development. To kick off events, attendees heard from presenters on the following topics:

  • Human factors: Shelly Heller, Ph.D., professor of the computer science department at GW
  • User interface prototyping: Tim Wood, Ph.D., assistant professor of the computer science department at GW
  • Regulatory environment: Linda Ricci, associate director for digital health within the Office of Device Evaluation, The Food and Drug Administration

Ahead of the workshop, the Children’s National and GW communities submitted ideas for consideration. Judges selected ten ideas for development at the workshop and organized teams of participants around each idea. Teams were judged on their overall presentation, durability of the application, and potential impact in the medical and health world. After careful deliberation, Team 10, also known as “The BabyDaddies,” won for their presentation on BabyData: A medical app for neonatal care providers. The newborn care mobile application aims to calculate the most commonly used values to promote efficient and evidence-based care for newborns in their first hours, days and weeks of life.

“Although some calculations are simple, a lot of time could be saved when you multiply those calculations by seeing 20 to 40 newborns a day,” says Jessica Herstek, M.D., Children’s National project lead and idea originator. “I wanted to create something easy that could help care providers on a day-to-day basis.”

Dr. Herstek is now working with CTSI-CN to bring the application to life. BabyData will feature calculators for measurements, weight assessments, risk evaluations, gestational and chronological age, nutrition, hydration, Group B Streptococcal prophylaxis and glucose infusion rate, all things currently being assessed manually. Medical providers who care for newborns in inpatient, emergency and outpatient settings will have all the resources they need consolidated into one field-specific calculator application.

Children’s National receives top safety and quality award

John M. Eisenberg Patient Safety and Quality Awar

As part of a collaborative of researchers, hospitalists and medical education specialists, Children’s National Health System was recently recognized with the highest patient safety and quality award in the country: The prestigious John M. Eisenberg Patient Safety and Quality Award. Administered by The Joint Commission and the National Quality Forum (NQF), two leading organizations that set standards in patient care, this award recognizes Children’s commitment to ensure safe and high-quality care for all patients.

The team at Children’s National helped develop a package of interventions used by more than 50 leading hospitals in the U.S. as part of a collaborative initiative called the I-PASS Study Group. The group helps standardize communications during handoffs of patients from one care team to another. This award-winning program was also shown to reduce harmful medical errors in a multi-center study published in the New England Journal of Medicine.

Patient handoffs happen multiple times per day in every hospital in the country, making it vitally important that the process is seamless and free of miscommunications.

Children’s National safety experts share strategies

Rahul Shah

Rahul Shah, M.D., Vice President and Chief Quality and Safety Officer at Children’s National Health System (CNHS), and his team joined pediatric quality and safety leaders from across the country in Orlando, Fla. for the Children’s Hospital Association’s 2017 Quality & Safety in Children’s Health Conference.

Earlier this month, Rahul Shah, M.D., Vice President and Chief Quality and Safety Officer at Children’s National Health System (CNHS), and his team joined pediatric quality and safety leaders from across the country in Orlando, Fla. for the Children’s Hospital Association’s 2017 Quality & Safety in Children’s Health Conference. Dr. Shah shared findings and strategies that have led Children’s National to be a leader in this field, and collaborated with peers to move the needle on pediatric safety in hospitals and improving the quality of care hospitals deliver.

Notable presentations from the Children’s National team included:

  • The Children’s National utilization of a safety culture survey called the Safety Attitude Questionnaire (SAQ), and the crucial role of ensuring leadership alignment in the survey process. Obtaining leadership buy-in and alignment allowed Children’s to accelerate the spread of identified opportunities for improvement within the organization.
  • The importance of an ongoing multi-disciplinary approach to care for psychiatry patients, a patient population that that continues to increase in American pediatric healthcare and requires innovative approaches. Children’s National team members emphasized the importance of training the hospital’s security teams and front-line caregivers in therapeutic interventions to seek optimal outcomes for patients, while respecting the complexity of their diagnoses.
  • How to drive reliability through apparent cause analyses. Kristen Crandall, Director of Patient Safety at Children’s National, shared examples of how to leverage data to effectively drive change in cause analyses. Cause analyses are fundamental tools for implementing improvement. The team highlighted the upcoming launch of a High Reliability Toolkit© developed at CNHS to ensure that action plans created from cause analyses are of adequate depth and sophistication to drive improvements.

Dr. Shah and his team also had the honor of delivering an Impact session on the final day of the conference, in which they discussed the applications of merging patient safety with patient experience. The team also shared the Children’s National approach to safety and service, which includes delivering a unified framework of high reliability through consistent messaging to demonstrate that when safety and service integrate and align, the sum is greater than the parts.

Children’s National to host 27th Annual Pediatric Neurology Update

The Children’s National Health System Center for Neuroscience and Behavioral Medicine is proud to host the 27th Annual Pediatric Neurology Update course.

This year’s course will be focused on the new understandings, molecular biology and novel treatments of childhood movement disorders ranging from Tourette’s syndrome to incapacitating neuro-genetic and auto-immune conditions.

We invite you to join us for presentations from renowned experts in the field in this full-day, CME accredited event on April 19, 2017 at the Children’s National main campus in Washington, D.C.

Children’s National experts present at American College of Cardiology 66th Annual Scientific Session

CNHI at ACC

Children’s National Heart Institute Team at American College of Cardiology 66th Annual Scientific Session & Expo.

The world’s leading cardiovascular specialists gathered in Washington, D.C., from March 17-19, 2017, to share the newest discoveries in treatment and prevention at the American College of Cardiology 66th Annual Scientific Session & Expo. Eleven Children’s National pediatric experts presented groundbreaking research and developments from their respective specialties. Gail Pearson, M.D., Sc.D., gave the prestigious Dan G. McNamara Lecture.

In her speech titled “The Future of Congenital Heart Disease Research: Keeping the Patient-Centered Promise,” Dr. Pearson reflected on the progress of congenital heart disease research and shared powerful narratives from patient families, detailing their hopes for the future. She also unveiled what’s on the horizon, including advances in genomics research, a data commons and new approaches for rare diseases. Dr. Pearson is a cardiologist within Children’s National Heart Institute, associate director of the Division of Cardiovascular Sciences, and director of the Office of Clinical Research at the National Heart, Lung, and Blood Institute.

Other highlights from Children’s National presenters include:

  • The Challenge of Anti-coagulation in the Pregnant Patient with Valvular/Congenital Heart Disease and Update on the Management of Adult Congenital Heart Disease, Anitha John, M.D., Ph.D.
  • ACC Talk: The IMPACT Registry Can Be Used by Families to Shop for the Best Center, Gerard Martin, M.D.

Cell therapy virtuoso: Catherine Bollard

Catherine Bollard

In the Medicine Maker piece, Cell Therapy Virtuoso, Children’s National Medical System’s Chief of Allergy and Immunology, Catherine Bollard M.D., discusses why she chose a career in medicine, the personal experience that ignited her interest in cell therapies, and her insights on the current state and future of the immunotherapy field. Highlights from the interview include:

  • On the promise of T-cell therapy: “We’ve now developed several T-cell therapies that give complete remission rates of approximately 75% and two-year progression-free survival rates ranging from 50 percent to over 90 percent depending on the patient population.”
  • Regarding the future of immunotherapy: “The field has expanded dramatically over the last 25 years. In particular, T-cell therapies for cancer have grown rapidly and now the field is expanding into other areas, such as regulatory T-cells for autoimmune disease and virus T-cells for HIV. Given what the immune system can do, the applications are almost limitless.”

Dr. Bollard was featured for her role as president of the International Society for Cellular Therapy.

FSH Society awards grant to Yi-Wen Chen

The FSH Society has awarded the FSH Society Grant FSHS-82016-4 to Children’s National researcher Yi-Wen Chen, D.M.V., Ph.D., to study facioscapulohumeral muscular dystrophy (FSHD).

Chen, Principal Investigator at the Center for Genetic Medicine Research at Children’s National and associate professor of pediatrics and integrative systems biology at George Washington University, will receive the research grant of $179,104 for two years for her project titled “Developing LNA-based therapy for facioscapulohumeral muscular dystrophy.”

FSHD is a complex genetic disorder caused by aberrantly expressed double homeobox protein 4 (DUX4) in patients’ cells that ultimately leads to the weakening of skeletal muscles often beginning in teenage years or early adulthood. Her research will focus on the next phases of developing LNA-based therapy for patients with FSHD through an in vivo study in a preclinical model.

“We have been designing compounds to inject into a preclinical model of FSHD in order to first reduce the DUX4 in the muscle and then identify the compounds that work best,” says Chen. Researchers will inject varying doses of the compound directly into the muscle for localized delivery and under the skin to reach the entire body for systemic delivery.

Currently there is no treatment for FSHD. After 15 years spent researching the disease, Chen hopes to test the efficacy of the compounds in order to identify a treatment.

POSNA awards clinical trials planning grant to Children’s National

Children’s National Health System has received a prestigious grant from the Pediatric Orthopaedic Society of North America (POSNA) to investigate pediatric femur fractures. The Clinical Trials Planning Grant in the amount of $30,000 will propel work to develop a clinical trial focused on femur fractures, with the ultimate goal of designing a multicenter trial for surgical treatment of pediatric femur fractures.

Providing more treatment options for kids with hep C

Parvathi Mohan

The Children’s National Hepatology Program, led by Parvathi Mohan, M.D., is one of the few centers on the East Coast participating in clinical trials offering regimens using the direct acting antiviral agent sofosbuvir to treat children and adolescents with chronic hepatitis C virus (HCV) infection.

The Children’s National Hepatology Program, led by Parvathi Mohan, M.D., is one of a few such centers on the East Coast of the U.S. and one of about 30 Hepatology programs throughout the U.S. and Europe, participating in clinical trials offering regimens using the direct acting antiviral agent sofosbuvir to treat children and adolescents with chronic hepatitis C virus (HCV) infection. Sofosbuvir-based treatments have been approved for adults with chronic HCV infection and proven to be highly successful in viral clearance close to 95 percent with minimal side effects, but they are not yet FDA approved for use in pediatrics.

Current HCV therapies available for children use pegylated-interferon and weight-based ribavirin but are unsatisfactory with only about 50 percent viral clearance in subjects with genotype 1, which is the most prevalent in the country. Most children treated with these therapies experience adverse events such as influenza-like illness, headache and a more concerning effect on growth and development.

Children’s is actively participating in several clinical trials to treat HCV with the ultimate goal of eradicating the virus, and these current trials with sofosbuvir are accepting children and adolescents ages 3-17 infected with all genotypes of the virus.

Patrick Hanley receives prestigious Manasevit Research Scholar Grant

Patrick Hanley, Ph.D

Patrick Hanley, Ph.D., will receive the award at the ASBMT national meeting in late February 2017.

The American Society of Blood and Marrow Transplantation and the National Marrow Donor Program have awarded the Amy Strelzer Manasevit Research Scholar grant award to Children’s National researcher Patrick J. Hanley.

Hanley, Ph.D., Laboratory Facility Director, Cellular Therapy and Stem Cell Processing and Assistant Professor of Pediatrics at The George Washington University, will receive the award at ASBMT national meeting in late February 2017. It is the first time a Children’s National staff member has been awarded this grant, which is for $240,000 over three years.

The Amy research program is one of the largest and most coveted research grants in the field of marrow and cord blood transplantation, according to the program’s website.

“The program develops the next generation of physician-scientists by supporting and encouraging the discovery of new ways to treat and prevent post-transplant complications,” the program reports.

Hanley plans to use the grant to treat patients on their upcoming clinical trial, “CHEERS”, which is for patients receiving a cord blood transplant. These patients will receive immune cells that were expanded from cord blood, called T cells, that have been trained in the lab to target viruses – a major complication after transplant.

“This grant enables us to evaluate whether cord blood T cells that recognize viruses like CMV and now BK virus can offer protection to patients who need it most,” Hanley says.

Learn more about the grant program.

Michael Hsieh

Michael Hsieh receives grant to explore parasite proteins for pain relief

Michael Hsieh

Michael Hsieh, M.D., hopes to use parasite proteins to alleviate pain in multiple types of bladder inflammation.

Children’s National Health System Urologist Michael Hsieh, M.D., was awarded a National Institutes of Health (NIH) grant to optimize a set of parasite proteins that could alleviate pain in multiple types of bladder inflammation.

The $1 million R01 grant will fund a five-year study to exploit a parasite-derived protein, IPSE, as a candidate therapeutic. Dr. Hsieh hypothesizes that IPSE may have the ability to modulate host immune and non-immune responses to bladder injury. IPSE could be optimized for therapeutic potential, while minimizing toxicity, by generating forms that have the ability to modulate host responses via three distinct mechanisms: IL-4-binding, chemokine-binding and nuclear localization.

MR-guided right heart catheterization live streams at SCMR scientific sessions

 Interventional Cardiac Magnetic Resonance (ICMR) Program Team

The ICMR team who performed the livestream procedure during the member assembly session. The prestigious invitation came as a result of the innovative partnership between Children’s National and the NHLBI to form the Interventional Cardiac MR Program.

Cardiologists from the Interventional Cardiac Magnetic Resonance (ICMR) Program at Children’s successfully live streamed a right heart catheterization procedure guided by magnetic resonance (MR) imaging during the Member Assembly Session of the Society for Cardiac Magnetic Resonance Scientific Session in early February.

The ICMR program is a first-in-the-nation partnership between Children’s National and the National Heart, Lung, and Blood Institute that features a state-of-the-art dedicated cardiac specific MRI suite for diagnosis, evaluation and intervention for children with heart conditions. The program’s goal is to advance diagnostic and interventional cardiac magnetic resonance imaging techniques in pediatric cardiology and for adults with congenital heart disease. ICMR is cross-disciplinary, connecting researchers, clinicians, engineers and physicists to provide more precise and less invasive diagnostics and treatment options that also reduce radiation exposure for vulnerable patients.

 

Muscular Dystrophy Association awards grants to two Children’s National scientists

Marshall Hogarth, Ph.D

Marshall Hogarth, Ph.D

James Novak, Ph.D.

James Novak, Ph.D.

Two Children’s National Health System research scientists, Marshall Hogarth, Ph.D. and James Novak, Ph.D., have received Post-Doctoral Development Grants from the Muscular Dystrophy Association (MDA) as part of funding awarded to young, rising researchers who are poised to become independent investigators.

Over the next three years, Hogarth and Novak will be allotted $180,000 each to underwrite their individual research projects.

Hogarth’s research is focused on limb-girdle muscular dystrophy (LGMD), a disease which presents as muscle weakness when patients are in their late teens before rapidly progressing to severe debilitation. The MDA grant will allow Hogarth to continue his research investigating the replacement of muscle with fatty tissue and the role this plays in the late onset and subsequent progression of LGMD in patients.

Novak focuses mainly on researching Duchenne Muscular Dystrophy (DMD), a severely debilitating form of MD, that leads to progressive muscle weakness and respiratory and cardiac failure. Currently, the only Food and  Drug Administration (FDA)  approved treatment for DMD is exon-skipping. The MDA grant will support Novak’s study of the mechanisms that regulate the delivery of exon-skipping drugs in muscle, in order to identify new therapeutic targets and improve drug efficacy for patients with DMD.

While Hogarth and Novak focus on different aspects of neuromuscular disease, both look forward to making significant contributions that lead to overall improvements in the treatment of patients impacted by muscular dystrophy.

Javad Nazarian named scientific director of the Brain Tumor Institute

Javad Nazarian

Javad Nazarian, Ph.D., has been named scientific director of the Brain Tumor Institute of the Children’s National Health System. Since 2006, Dr. Nazarian has been an active member of the Brain Tumor Institute, contributing to the advancement in understanding pediatric brain tumors.

He has been instrumental in his role as a Principal Investigator in the Center for Cancer and Immunology Research where his laboratory actively investigates the molecular mechanisms of diffuse intrinsic pontine gilomas (DIPGs) and establishes preclinical models of pediatric brain tumors.

Dr. Nazarian has also contributed to the expansion of the comprehensive biorepository at Children’s National, growing from 12 samples six years ago to more than 3,000 specimens donated by more than 900 patients with all types of pediatric brain tumors, including DIPG. Recently he was appointed Scientific Co-chair of the Children’s Brain Tumor Tissue Consortium.

Doctor holding preemie's hand

Children’s National creates first-of-its-kind Rare Disease Institute

Children’s National Health System has announced the creation of the Children’s National Rare Disease Institute (CNRDI), a first-of-its-kind clinical research center focused exclusively on the care and treatment of children and adults with rare genetic disorders. Designated by the National Organization for Rare Disorders (NORD) as the first Center of Excellence for Clinical Care for Rare Diseases, the CNRDI will focus on developing care standards for patients, advancing research and developing new therapies to better treat rare diseases. The institute will be led by Marshall Summar, M.D., Chief of Genetics and Metabolism at Children’s National, and will collaborate with the NORD natural history/registry program, which was developed with input from the U.S. Food and Drug Administration and the National Institutes of Health to advance monitoring databases for patient outcomes and disease.