ABOUT
The mission of the INTO-HLH Registry is to partner with patients and families affected by HLH to develop deeper understanding of HLH which will help improve the diagnosis, treatment and outcomes for children and adults with HLH.
While HLH was first identified as a genetic, pediatric disease, increasing numbers of adults are diagnosed with HLH due to improved awareness of this condition. Since HLH is rare, the INTO-HLH Registry provides a way for any patient with HLH or an HLH-like condition to share information and samples to enable research to improve the outcomes for future patients.
Meet the INTO-HLH Research Team
Michael B. Jordan, MD
Principal Investigator and Chair of the Steering Committee
Michael.jordan@cchmc.org
Dr. Jordan directs the INTO-HLH Registry. He is a Professor of Pediatrics at Cincinnati Children's Hospital Medical Center and the University of Cincinnati School of Medicine as well as the Scientific Director of the CCHMC HLH Center of Excellence. Dr. Jordan provides clinical care and consultation for patients with HLH and other immune conditions. He conducts clinical and laboratory research to improve diagnosis and treatment for HLH and is internationally known for his scientific and medical expertise related to HLH and other inborn immunoregulatory disorders. He is the current president of the international Histiocyte Society, and his scientific work is the foundation of our modern understanding of how HLH develops. His discoveries over the last two decades led to the development of treatments for patients with HLH.
Carl E. Allen, MD, PhD
Co-Chair of the Steering Committee
ceallen@texaschildrens.org
Dr. Allen's overall professional goal is to improve outcomes for children with cancer and blood disorders by addressing areas of greatest unmet need through innovative research, collaboration, and mentorship. He is currently a Professor of Pediatrics at Baylor College of Medicine, Co-Director of the Lymphoma and Histiocytosis Programs, and Director of Research for Global HOPE. His research group focuses on clinical and translational research efforts to develop, and test improved therapeutic strategies for children with histiocytic disorders, lymphoproliferative disorders, and lymphomas. He is a Co-Director of the North American Consortium for Histiocytosis (NACHO), along with Dr. Carlos Rodriguez-Galindo (St. Jude). His team at Texas Children's organizes NACHO network (>60 institutions) tissue and clinical data collection through the NACHO-BIO study.
David Fajgenbaum, MD, MBA, MSc
Steering Committee Member
davidfa@pennmedicine.upenn.edu
Dr. Fajgenbaum is an Assistant Professor of Medicine at the University of Pennsylvania, Founding Director of the Center for Cytokine Storm Treatment & Laboratory (CSTL), Associate Director of Patient Impact for the Penn Orphan Disease Center, and co-Founder/President of the Castleman Disease Collaborative Network (CDCN). He is also a patient battling idiopathic multicentric Castleman disease (iMCD) that is in his longest remission, thanks to a precision treatment he identified. One of the youngest individuals ever appointed to the faculty at Penn Medicine and in the top 1 percent youngest awardees of an NIH R01 grant, Dr. Fajgenbaum leads over 20 translational research studies, including the ACCELERATE Natural History Registry, CORONA project, and a clinical trial of the drug that is saving his life.
Edward Behrens, MD
Steering Committee Member
behrens@chop.edu
Dr. Edward Behrens is the Joseph Lee Hollander Associate Professor in Pediatric Rheumatology at The Perelman School of Medicine at the University of Pennsylvania and The Children’s Hospital of Philadelphia (CHOP). He is devoted to the clinical care and research of rare an orphan immune dysregulation disorders including HLH and MAS. He is Chief of the Division of Rheumatology at CHOP and has an international reputation as a clinician and investigator in hyperinflammatory diseases. His laboratory investigates the mechanisms behind hemophagocytic syndromes to provide a better understand of how the runaway inflammatory process ultimately leads to organ injury.
Deanna Fournier
Steering Committee Member and Chair of the Patient Advocacy Subcommittee
deannafournier@histio.org
Deanna Fournier, LCH Survivor, is the Executive Director of the Histiocytosis Association, a global nonprofit dedicated to addressing the unique needs of those impacted by histiocytic disorders and long-standing partner to the Histiocyte Society. Ms. Fournier serves on various panels in her role on behalf of the histiocytosis community, including the PCORI Rare Disease Advisory Panel, Patient Advocate for the National Comprehensive Cancer Network (NCCN) Clinical Guidelines for histiocytic neoplasms, the Membership Committee for the National Organization for Rare Disorders (NORD), and Community Congress with EveryLife Foundation, the Follow Up Study with UAB and the INTO-HLH Registry Patient Advisory Subcommittee.
Adi Zoref-Lorenz, MD
The INTO-HLH Registry Project Leader
Adi.zoref.lorenz@cchmc.org
Dr. Zoref-Lorenz is an internal medicine specialist and instructor at Tel Aviv University in Israel with expertise in hemophagocytic lymphohistiocytosis (HLH). Her career focus is to conduct clinical and translational studies of HLH in the context of hematologic diseases to improve the poor outcome of this syndrome. She leads the initiation of the INTO-HLH registry activities.
Nitya Gulati, MBBS, FAAP
Pediatric Hematologist/Oncologist
nxgulati@texaschildrens.org
Dr. Gulati is a pediatric hematologist/oncologist at Texas Children's Hospital (TXCH) and Baylor College of Medicine (BCM) with expertise in pediatric histiocytic disorders and lymphomas. Her research efforts focus on identifying pathogenic mechanisms of pediatric histiocytic disorders to identify potential therapeutic targets. Somatic activating mutations in MAPK genes (primarily BRAF and MAP2K1) have been identified in >85% of cases of Langerhans cell histiocytosis (LCH). Based on these findings, Dr. Gulati, in collaboration with Dr. Allen and the Histiocytosis group at TXCH, is developing targeted strategies to inhibit MAPK hyperactivation in collaboration with industry and cooperative clinical trial groups, including NACHO and Children's Oncology Group (COG).
Kathryn E Coates
The INTO-HLH Registry Program Manager
Kathryn.coates@cchmc.org
Kathryn is a highly accomplished individual with extensive experience in the fields of computer science, management science, and project management. She holds a Bachelor of Science in Computer and Information Science from The Ohio State University, as well as a Master of Science in Management Science from the University of Dayton. She oversees all of the INTO-HLH registry activities and performs the duty of Secretary for the Into-HLH Steering Committee. Her passion for advocacy is fulfilled by making sure all patients and families know they are an integral part of building a community of hope.
Meet Our Partners at Sobi
Laura Saltonstall, MD
Vice President Immunology Medical Affairs Sobi North America
laura.saltonstall@sobi.com
Laura leads Immunology Medical Affairs in North America for Sobi. She was previously Vice President Medical Affairs at Applied Therapeutics and Vice President, U.S.&LATAM Medical Affairs at Alnylam. During her tenure at Alnylam, she has supported the launches of ONPATTRO, GIVLAARI and OXLUMO. Prior to joining Alnylam, Laura spent 14 years at Sanofi Genzyme where she was most recently Vice President, Head of Multiple Sclerosis Medical Affairs in North America. Earlier at Sanofi, she led the US LEMTRADA Medical Directors team and established the Multiple Sclerosis global scientific communications group. In these roles, she helped launch two therapies for multiple sclerosis, AUBAGIO and LEMTRADA. Laura serves on the board of trustees for Vincent Memorial Hospital, The Boston Home and the Massachusetts Eye and Ear Infirmary.
Abiola Oladapo, B.Pharm, MSc, PhD
Senior Director, HEOR & RWE, Immunology, Sobi North America
Steering Committee Member
abiola.oladapo@sobi.com
Dr. Oladapo is an outcomes researcher with extensive industry experience (Pfizer, Baxter, Baxalta, Shire, Takeda, and Sobi) initiating and delivering health economics and outcomes research (HEOR) strategies and tactics, including the execution of real-world evidence (RWE) generation strategies for therapies across different therapeutic areas (including cardiovascular, metabolic, immunology and rare diseases), phases of product life cycle and geographic regions. He currently leads the HEOR & RWE team at Sobi North America. His research interest over the past decade has been in the rare disease space, mostly blood- and immune-related disorders.
Corey Best, MBA, MSc, PMP
Senior Director, North America Study Operations, Sobi North America
corey.best@sobi.com
Mr. Best serves as Sr. Director of North America Study Operations at Sobi working on the HEOR & RWE team. He has over 20 years of experience in Operations, Program and Life Cycle Management, and Organization Development across different therapeutic areas (including pulmonary, infectious disease, rheumatology, cardiovascular, gastroenterology, neurology, hepatology, immunology, and rare disease). He has worked in large biotech, mid-size pharma, and CRO companies while also leading initiatives in a start-up biotech to further drug development programs.