Holger Storf

Holger Storf
University Hospital Frankfurt · Medical Informatics Group (MIG)

Dr.

About

102
Publications
9,189
Reads
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665
Citations
Citations since 2017
66 Research Items
540 Citations
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2017201820192020202120222023020406080100120140
2017201820192020202120222023020406080100120140
2017201820192020202120222023020406080100120140
Additional affiliations
January 2018 - present
University Hospital Frankfurt
Position
  • Head
January 2016 - December 2017
German Cancer Research Center
Position
  • Senior Researcher
January 2016 - present
University Hospital Frankfurt
Position
  • Head
Education
September 2010 - April 2013
Universität Heidelberg
Field of study
  • Medical Informatics
September 2004 - August 2007
Universität Heidelberg
Field of study
  • Medical Informatics

Publications

Publications (102)
Article
Full-text available
Background Due to their low prevalence (< 5 in 10,000), rare diseases are an important area of research, with the active participation of those affected being a key factor. In the Citizen Science project “SelEe” (Researching rare diseases in a citizen science approach), citizens collaborate with researchers using a digital application, developed as...
Article
Full-text available
Zusammenfassung Als Seltene Erkrankungen (SE) gelten in der Europäischen Union (EU) Krankheiten, von denen nicht mehr als 5 von 10.000 Menschen betroffen sind. Aufgrund ihrer Seltenheit sind klinische Expertise und qualitätsgesicherte Versorgungsstrukturen rar, die Forschung ist hier im Vergleich zu anderen Krankheiten erschwert. Diese Probleme kön...
Chapter
Full-text available
Within the scope of the two NUM projects CODEX and RACOON we developed a preliminary technical concept for documenting clinical and radiological COVID-19 data in a collaborative approach and its preceding findings of a requirement analysis. At first, we provide an overview of NUM and its two projects CODEX and RACOON including the GECCO data set. F...
Chapter
The ERN-LUNG Population Registry is a new European-wide collection of patients with rare lung diseases, allowing patients to register online in the registry. Medical experts can recruit patients in the registry for disease-specific registries and care options. The Population Registry was implemented on the basis of the open source software OSSE and...
Article
Automated coding of diseases can support hospitals in the billing of inpatient cases with the health insurance funds. This paper describes the implementation and evaluation of classification methods for two selected Rare Diseases. Different classifiers of an off-the-shelf system and an own application are applied in a supervised learning process an...
Chapter
Full-text available
Background: The Open Source Registry System for Rare Diseases (OSSE), a web-based tool to create rare disease patient registries, currently offers no possibility to view aggregated registry data within the system. Here, we present the development and implementation of a dashboard for the registry of the German NEOCYST (Network for early onset cyst...
Chapter
Full-text available
The diagnosis of rare diseases is often challenging for physicians, but can be supported by Clinical Decision Support Systems. The MIRACUM consortia, which includes ten university hospitals in Germany, develops a Clinical Decision Support System to support the diagnosis of patients with rare diseases. The users are involved in different phases usin...
Article
Full-text available
Objective To assess the change in inpatient radiotherapy related to COVID-19 lockdown measures during the first wave of the pandemic in 2020. Methods We included cases hospitalized between January 1 and August 31, 2018–2020, with a primary ICD-10 diagnosis of C00–C13, C32 (head and neck cancer, HNC) and C53 (cervical cancer, CC). Data collection w...
Article
Full-text available
Background About 30 million people in the EU and USA, respectively, suffer from a rare disease. Driven by European legislative requirements, national strategies for the improvement of care in rare diseases are being developed. To improve timely and correct diagnosis for patients with rare diseases, the development of a registry for undiagnosed pati...
Conference Paper
Full-text available
With 263-446 million patients affected worldwide, rare diseases are a global health challenge [1]. As early diagnosis and adequate treatment are often difficult, rare diseases require specialized care. In Germany, care for rare disease patients is often provided at specialized centers (“Zentren für Seltene Erkrankungen”), typically located at unive...
Chapter
Full-text available
Citizen science allows involving interested citizen in the entire research process in science. In the past, various citizen science projects have been performed in different research fields, especially in human medicine. We conducted a rapid scoping review to determine which citizen projects in human medicine already used software-based systems to...
Preprint
Full-text available
Background In rare diseases, only a low number of regionally distributed experts are available in medical care. The health service platform for rare diseases (www.se-atlas.de) provides a search for health care providers and patient organisations in Germany for specific rare diseases and presents the results to patients or physicians. The objective...
Article
Full-text available
Zusammenfassung Eine Erkrankung zählt in der Europäischen Union zu den Seltenen Erkrankungen (SE), wenn diese nicht mehr als 5 von 10.000 Menschen betrifft. Derzeit existiert mit mehr als 6000 SE eine sowohl große als auch heterogene Menge an unterschiedlichen Krankheitsbilder, die in ihrer Symptomatik komplex, vielschichtig und damit im medizinisc...
Article
Background: With hundreds of registries across Europe, rare diseases (RDs) suffer from fragmented knowledge, expertise, and research. A joint initiative of the European Commission Joint Research Center and its European Platform on Rare Disease Registration (EU RD Platform), the European Reference Networks (ERNs), and the European Joint Programme o...
Chapter
Full-text available
This short paper aims to raise awareness of good usability design in medical computer sciences. We present a research plan about developing usability design guidelines for web application development in medical informatics. Following a nimble creation process we shall create a guideline tailored for software developers, that aims to improve communi...
Chapter
Full-text available
Web-based patient registries support clinicians by providing a way to effectively store and process data. Here, we present a new feature for the open-source registry software OSSE: medical reports generated with R Markdown. As part of a rare disease research project, we describe the process from requirements assessment to the current state of techn...
Chapter
Full-text available
Rare lung diseases affect 1.5–3 million people in Europe while causing bad prognosis or early deaths for patients. The European Reference Network for Respiratory Diseases (ERN-Lung) is a patient centric network, funded by the European Union (EU). The aims of ERN-LUNG is to increase healthcare and research regarding rare respiratory diseases. An ini...
Chapter
Full-text available
The diagnosis of patients with rare diseases is often delayed. A Clinical Decision Support System using similarity analysis of patient-based data may have the potential to support the diagnosis of patients with rare diseases. This qualitative study has the objective to investigate how the result of a patient similarity analysis should be presented...
Article
Full-text available
Background Rare Diseases (RDs) are difficult to diagnose. Clinical Decision Support Systems (CDSS) could support the diagnosis for RDs. The Medical Informatics in Research and Medicine (MIRACUM) consortium developed a CDSS for RDs based on distributed clinical data from eight German university hospitals. To support the diagnosis for difficult patie...
Article
Full-text available
The COVID-19 pandemic has caused strains on health systems worldwide disrupting routine hospital services for all non-COVID patients. Within this retrospective study, we analyzed inpatient hospital admissions across 18 German university hospitals during the 2020 lockdown period compared to 2018. Patients admitted to hospital between January 1 and M...
Article
Full-text available
The diagnosis of patients with rare diseases is often delayed. A Clinical Decision Support System using similarity analysis of patient-based data may have the potential to support the diagnosis of patients with rare diseases. This qualitative study has the objective to investigate how the result of a patient similarity analysis should be presented...
Preprint
Full-text available
Background Rare Diseases (RDs) are difficult to diagnose. Clinical Decision Support Systems (CDSS) could support the diagnosis for RDs. The MIRACUM (Medical Informatics in Research and Medicine) consortium developed a CDSS for RDs based on distributed clinical data from ten German university hospitals. To support the diagnosis for difficult patient...
Preprint
Full-text available
Background: About 30 million people in the EU and USA, respectively, suffer from a rare disease. Driven by European legislative requirements, national strategies for the improvement of care in rare diseases are being developed. To improve timely and correct diagnosis for patients with rare diseases, the development of a registry for undiagnosed pat...
Preprint
Full-text available
Background: About 30 million people in the EU and USA, respectively, suffer from a rare disease. Driven by European legislative requirements, national strategies for the improvement of care in rare diseases are being developed. To improve timely and correct diagnosis for patients with rare diseases, the development of a registry for undiagnosed pat...
Article
Full-text available
Background: The German Network on Primary Immunodeficiency Diseases (PID-NET) utilizes the European Society for Immunodeficiencies (ESID) registry as a platform for collecting data. In the context of PID-NET data, we show how registries based on custom software can be made interoperable for better collaborative access to precollected data. The Open...
Article
Full-text available
Background: Rare Diseases (RDs), which are defined as diseases affecting no more than 5 out of 10,000 people, are often severe, chronic and life-threatening. A main problem is the delay in diagnosing RDs. Clinical decision support systems (CDSSs) for RDs are software systems to support clinicians in the diagnosis of patients with RDs. Due to their...
Article
Full-text available
Background: Patients with rare diseases (RDs) are often diagnosed too late or not at all. Clinical decision support systems (CDSSs) could support the diagnosis in RDs. The MIRACUM (Medical Informatics in Research and Medicine) consortium, which is one of four funded consortia in the German Medical Informatics Initiative, will develop a CDSS for RD...
Article
Full-text available
Clinical decision support systems (CDSS) help to improve the diagnostics and treatment of rare diseases (RD). As one of four funded consortia of the Medical Informatics Initiative supported by the Federal Ministry of Education and Research (BMBF, Germany), MIRACUM develops a clinical decision support system (CDSS) for RD based on distributed data o...
Article
Rare conditions can make it difficult for physicians and healthcare providers to find the right answers and treatment for patients suffering rare diseases. The number of experts specializing in rare diseases in Europe is low. In order to ensure qualified diagnosis, treatment and care for these patients, the European Commission has founded the Europ...
Article
Full-text available
Der Nationale Aktionsplan für Menschen mit Seltenen Erkrankungen (SE) enthält 52 konkrete Maßnahmen, u. a. in den Handlungsfeldern Versorgung, Forschung, Diagnose und Informationsmanagement. Mit dem Ziel, langfristig die Qualität und Interoperabilität von nationalen Registern zu erhöhen, sieht Maßnahmenvorschlag 28 die Etablierung einer Strategiegr...
Preprint
Full-text available
Background Patients with a rare disease (RD) are often diagnosed too late or not at all. Clinical decision support systems (CDSSs) could support the diagnostic process in rare diseases (RDs). The MIRACUM (Medical Informatics in Research and Medicine) consortium, which is one of four funded consortia in the German Medical Informatics Initiative, wil...
Preprint
Full-text available
Background Patients with rare diseases (RDs) are often diagnosed too late or not at all. Clinical decision support systems (CDSSs) could support the diagnosis in RDs. The MIRACUM (Medical Informatics in Research and Medicine) consortium, which is one of four funded consortia in the German Medical Informatics Initiative, will develop a CDSS for RDs...
Preprint
Full-text available
Background Patients with rare diseases (RDs) are often diagnosed too late or not at all. Clinical decision support systems (CDSSs) could support the diagnosis in RDs. The MIRACUM (Medical Informatics in Research and Medicine) consortium, which is one of four funded consortia in the German Medical Informatics Initiative, will develop a CDSS for RDs...
Preprint
BACKGROUND The German Network on Primary Immunodeficiency Diseases (PID-NET) utilizes the European Society for Immunodeficiencies (ESID) Registry as a platform for collecting data. In the context of PID-NET data we show how registries based on custom software can be made interoperable for better collaborative access to pre-collected data. OSSE (Ope...
Preprint
Background Rare Diseases (RD), which are defined as diseases affecting not more than 5 out of 10,000 people, are often severe, chronic, degenerative and life-threating. A main problem is the delay in diagnosis of RD. Clinical Decision Support Systems (CDSS) for RD are software-systems to support physicians in the diagnosis of patients with RD. It w...
Poster
Full-text available
64. Jahrestagung der Deutschen Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie e. V. (GMDS)
Article
Interoperability is a growing demand in healthcare, caused by heterogeneous sources, which aggravate information transfer. The interoperability issues can be addressed by metadata repositories. These support to ensure syntactical interoperability, like compatible data formats or value ranges, however especially semantic interoperability is still ch...
Article
Clinical Decision Support Systems (CDSS) are promising to support physicians in finding the right diagnosis of patients with rare diseases (RD). The MIRACUM consortium, which includes ten university hospitals in Germany, will establish a diagnosis support system for RD. This system conducts a similarity analysis on distributed clinical data with th...
Conference Paper
Introduction: The radiosurgical department at the University Cancer Center (UCT) moves from paper based records and institute-operated databases to a professional data collection system to improve accessibility and data transfer. Moreover, the data should be related to all other multimodal treatment results, hence, clinical research, quality assura...
Article
Full-text available
Introduction: This article is part of the Focus Theme of Methods of Information in Medicine on the German Medical Informatics Initiative. Similar to other large international data sharing networks (e.g. OHDSI, PCORnet, eMerge, RD-Connect) MIRACUM is a consortium of academic and hospital partners as well as one industrial partner in eight German ci...
Article
Full-text available
Background: Recently, public and political interest has focused on people living with rare diseases and their health concerns. Due to the large number of different types of rare diseases and the sizable number of patients, taking action to improve the life of those affected is gaining importance. In 2013, the federal government of Germany adopted...
Article
Full-text available
Background: Rare diseases are, by definition, very serious and chronic diseases with a high negative impact on quality of life. Approximately 350 million people worldwide live with rare diseases. The resulting high disease burden triggers health information search, but helpful, high-quality, and up-to-date information is often hard to find. Theref...
Article
Full-text available
Background In 2015, the German Federal Ministry of Education and Research initiated a large data integration and data sharing research initiative to improve the reuse of data from patient care and translational research. The Observational Medical Outcomes Partnership (OMOP) common data model and the Observational Health Data Sciences and Informatic...
Article
se-atlas - the health service information platform for rare diseases - is part of the German National Action Plan for People with Rare Diseases. The website www.se-atlas.de provides an overview of health care providers and support groups focusing on rare diseases in Germany. Since the start of se-atlas in 2013, several strategies are being develope...
Article
Due to low prevalence of rare diseases and lack of expertise, patients suffering rare diseases are challenged with finding experts that are specialized and experienced in treating their conditions and get qualified answers. To address this issue, the approach of an interactive platform was made, which should allow affected patients or physicians th...
Article
Full-text available
Introduction: This article is part of the Focus Theme of Methods of Information in Medicine on the German Medical Informatics Initiative. Similar to other large international data sharing networks (e.g. OHDSI, PCORnet, eMerge, RD-Connect) MIRACUM is a consortium of academic and hospital partners as well as one industrial partner in eight German cit...
Article
The Open Source Registry for Rare Diseases (OSSE) provides a concept and a software for the management of registries for patients with rare diseases. A disease is defined as rare if less than 5 out of 10,000 people are affected. Up to date, approximately 6,000 rare diseases are catalogued. Networking and data exchange for research purposes remains...
Article
Full-text available
Collaboration in medical research is becoming common, especially for collecting relevant cases across institutional boundaries. If the data, which is usually very heterogeneously formalized and structured, can be integrated, such a collaboration can facilitate research. An absolute prerequisite for this is an extensive description about the formali...
Article
Der se-atlas – medizinischer Versorgungsatlas für seltene Erkrankungen – wird im Rahmen des Nationalen Aktionsplans für Menschen mit Seltenen Erkrankungen umgesetzt und vom Bundesministerium für Gesundheit gefördert. Ziel der webbasierten Informationsplattform ist es, die Versorgungslandschaft für seltene Erkrankungen benutzerfreundlich und transpa...
Article
Background: A central information portal on rare diseases (ZIPSE) has been conceptualized and implemented that allows patients, relatives and health care professionals to access quality-assured information. For this purpose, quality criteria have been developed specifically for rare diseases. At the same time, the information basis should take int...
Article
Kleine lokale Datenbestände, wenige Experten sowie mangelnde Interoperabilität kennzeichnen die Landschaft von Registern für seltene Erkrankungen (SE). Dies führte zur Entwicklung des freien Softwaresystems OSSE (Open-Source-Registersystem für Seltene Erkrankungen) zur Erstellung von SE-spezifischen Patientenregistern. Mit der Software können die z...
Article
Full-text available
Background: The importance of the Internet as a medium for publishing and sharing health and medical information has increased considerably during the last decade. Nonetheless, comprehensive knowledge and information are scarce and difficult to find, especially for rare diseases. Additionally, the quality of health or medical information about rare...
Conference Paper
Full-text available
Cross-institutional biobank networks hold the promise of supporting medicine by enabling the exchange of associated samples for research purposes. Various initiatives, such as BBMRI-ERIC and German Biobank Node (GBN), aim to interconnect biobanks for enabling the compilation of joint biomaterial collections. However, building software platforms to...
Conference Paper
Full-text available
Information retrieval is a major challenge in medical informatics. Various research projects have worked on this task in recent years on an institutional level by developing tools to integrate and retrieve information. However, when it comes down to querying such data across institutions, the challenge persists due to the high heterogeneity of data...
Presentation
Full-text available
Cross-institutional biobank networks hold the promise of supporting medicine by enabling the exchange of associated samples for research purposes. Various initiatives, such as BBMRI-ERIC and German Biobank Node (GBN), aim to interconnect biobanks for enabling the compilation of joint biomaterial collections. However, building software platforms to...
Article
Background: The European Union considers diseases to be rare when they affect less than 5 in 10,000 people. It is estimated that there are between 5000 and 8000 different rare diseases. Consistent with this diversity, the quality of information available on the Web varies considerably. Thus, quality criteria for websites about rare diseases are nee...
Article
Full-text available
Background: The assessment of activities of daily living (ADL) is essential for dementia diagnostics. Even in mild cognitive impairment (MCI), subtle deficits in instrumental ADL (IADL) may occur and signal a higher risk of conversion to dementia. Thus, sensitive and reliable ADL assessment tools are important. Smart homes equipped with sensor tech...