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Sobi Announces Launch of the INTO-HLH Registry, a Disease Registry for Patients with Hemophagocytic Lymphohistiocytosis (HLH)

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Sobi North America
Sobi North America

INTO-HLH Registry serves as the first in-depth disease registry for the HLH medical and patient community in North America

WALTHAM, Mass., June 28, 2022 (GLOBE NEWSWIRE) -- Sobi® North America today announced the launch of the INTO-HLH Registry, a new disease registry for patients with hemophagocytic lymphohistiocytosis (HLH). The INTO-HLH Registry (Insight into the Natural history and Treatment Outcomes of Hemophagocytic Lymphohistiocytosis) will enroll pediatric and adult patients with HLH, a rare and life-threatening disease characterized by hyperinflammation affecting multiple organs of the body. The registry will be led by Michael B. Jordan, M.D., of Cincinnati Children’s Hospital Medical Center.

"Most of what the scientific and medical community knows about the natural history of HLH and treatment outcomes is based on expert opinion or retrospective surveys and reports from 15 to 25 years ago," said Jordan, a professor in the Division of Bone Marrow Transplantation and Immune Deficiency at Cincinnati Children's in the U.S. and principal investigator of the INTO-HLH Registry. "Although scientific insight into HLH and treatment have evolved substantially over the last two decades, long-term data are limited and not reflective of the evolving treatment landscape. We hope that efforts such as this disease registry will improve our understanding of the natural history of HLH and treatment patterns and outcomes so we can better manage our patients with HLH."

The INTO-HLH Registry is designed to define the natural history of HLH, including the full diagnostic and treatment journey that patients with HLH experience. The registry also aims to provide critical insights into the burden of HLH and its impact on quality of life and health care resource use. INTO-HLH Registry will enroll pediatric and adult patients with clinically suspected or confirmed diagnoses of HLH or HLH-related conditions via the registry's website ( and across more than 42 participating North American Consortium for HistioOcytosis (NACHO) sites and other clinical centers in the U.S. and Canada. The INTO-HLH Registry Steering Committee will oversee management of the registry and use of data, and a team from Cincinnati Children's will oversee abstraction of patients' medical records, as well as overall project management for the registry.

"As part of our commitment to the HLH community, we are pleased to support INTO-HLH, the first comprehensive and detailed HLH disease registry in North America," said John Yee, M.D., M.P.H., Chief Medical Officer, North America, Sobi Inc., and member of the INTO-HLH Registry Steering Committee. "The INTO-HLH Registry will serve as a rich source of data to meet current and future research needs, with the goal of improving the lives of patients living with HLH. More broadly, we hope that INTO-HLH Registry will create a ‘community of hope’ for physicians, scientists, patients, and patient organizations.”

The INTO-HLH disease registry can be accessed at and via [NCT05277272].

About HLH
Hemophagocytic lymphohistiocytosis (HLH) is a hyperinflammatory syndrome resulting in life-threatening organ damage. The causes of HLH are not always clear, but the syndrome most often occurs due to inborn problems of immune regulation or as a complication of rheumatologic conditions or cancers. Infections also may trigger it in each of these contexts. HLH is characterized by a unique set of clinical and laboratory features such as low blood counts, very elevated markers of inflammation, and an increase in the size of the spleen. An important part of this condition is the excessive release of inflammatory cytokines, often called a "cytokine storm," though this term also applies to conditions other than HLH. This distinctive condition occurs in different clinical contexts, where it may appear and be treated somewhat differently. The treatment objective is to control the hyper inflammation and allow patients to receive a bone marrow transplant (if needed) to correct their immune system and prevent HLH from recurring.

About Sobi
Sobi is a specialised international biopharmaceutical company transforming the lives of people with rare diseases. Providing sustainable access to innovative medicines in the areas of haematology, immunology and specialty care, Sobi has approximately 1,600 employees across Europe, North America, the Middle East and Asia. In 2021, revenue amounted to SEK 15.5 billion. Sobi's share (STO:SOBI) is listed on Nasdaq Stockholm. More about Sobi at,, LinkedIn and Twitter.

To contact Sobi North America Corporate Communications, please email

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