First-of-its-Kind, Global Data Repository for Interstitial Lung Diseases Launches Through Academic and Industry Collaborative

HOLLAND,Mich.,Sept. 7,2021 --The Open Source Imaging Consortium (OSIC) today announced the launch of its global,data-rich repositoryof anonymized HRCT scans and clinical information regarding interstitial lung diseases (ILDs). This first-of-its-kind database is the world's largest and most diverse,with a plethora of real world clinical and imaging data that is both multi-ethnic and multi-center. The OSIC Data Repository currently houses close to 1,500 anonymized and quality-controlled scans with accompanying data,and has an additional 5,000 in the quality control queue. It is on track to reach its goal of 15,000 anonymized scans,available to OSIC members,by first quarter 2022.

OSIC – a global,501(c)(3),not-for-profit cooperative effort between academia,industry and patient advocacy groups – was created to enable rapid,open source advances in the fight against idiopathic pulmonary fibrosis (IPF),fibrosing ILDs,and other respiratory diseases,including emphysematous conditions. Radiologists,clinicians,computational scientists,and industry competitors from around the world collaborated for almost three years on the development of the database itself,and are working together to advance digital imaging biomarkers for accurate imaging-based diagnosis,prognosis and prediction of response to therapy. Any OSIC-created algorithms will be made open source for the benefit of patients everywhere.

"Building the OSIC repository has been a collaboration in its truest sense,with people from different disciplines,organizations,and countries all coming together on behalf of patients everywhere. This ability to collect and organize anonymized imaging and clinical data from across the world is the future of clinical science," said Dr. Kevin Brown,National Jewish Health & OSIC pulmonology lead. "We've seen efforts like this in common diseases,but nothing truly like it for rare diseases. As the OSIC database grows and we continuously learn from it,a real and substantial improvement in our ability to diagnose early,to predict outcomes,and to measure responses to therapy will be the result."

"In recent years,we have seen rapid developments in advanced medical imaging analysis,but a major obstacle to harnessing this technology used to study pulmonary fibrosis is the lack of large diverse imaging repositories needed for computer training," said Dr. Simon Walsh,National Heart and Lung Institute,Imperial College London & OSIC radiology lead. "OSIC addresses this unmet need by providing researchers with the data needed to develop AI-based applications for improving patient care and facilitating precision medicine. Being able to reliably predict how pulmonary fibrosis will progress in an individual patient would allow doctors to initiate appropriate treatment at the earliest opportunity and slow disease progression. It remains one of the most urgent challenges for effective management for patients with fibrotic lung disease."

The OSIC Data Repository was built with images and clinical data from a variety of sources,and every scan has been anonymized with a personal and automated quality control check. The organization is seeking additional scans from governmental agencies,patient advocacy groups,and through direct patient outreach. The database has been vetted by two global GDPR/HIPAA privacy firms,has Central IRB and multiple institution IRB approvals,and will be managed in compliance with all applicable privacy laws,regulations,consents and related restrictions.

"The future of medical research depends heavily on our ability to collate significant amounts of data,and make that data available for detailed and open scientific investigation. It's a proud moment that OSIC is at the forefront of this movement," said Dr. David Barber,University College London & OSIC computational science lead. "Data is the essence of scientific progress and the OSIC Data Repository already contains preliminary data rich enough to better understand the causes of disease,leading to better treatment and patient outcomes."

OSIC is steered by subject-matter experts Dr. Kevin Brown,Dr. Simon Walsh,and Dr. David Barber. It is also supported by an impressive list of global member institutions and partners,including the American Lung Association,EU-IPFF,PF Warriors,Action for Pulmonary Fibrosis,Boehringer Ingelheim,Siemens Healthineers,CSL Behring,Galapagos,FLUIDDA,Brainomix,NationalJewish Health,National and Kapodistrian University of Athens,Université de Lyon,Hospices Civils de Lyon,University of Vienna,National Hospital Organization Kinki-Chuo Chest Medical Center,Royal Brompton and Harefield Foundation Trust,University of Arizona College of Medicine – Phoenix,Pavilhão Pereira Filho – Santa Casa de Misericórdia de Porto Alegre,The Research Institute of St. Joe's Hamilton,Thirona,Universita di Genova,Fondazione Policlinico Universitario Agostino Gemelli,VIDADiagnostics,andimvaria.

To stay up-to-date on the latest OSIC news,visit OSICILD.org or follow the organization on Twitter at @OSICild.