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As multiple indications for botulinum toxin injections (BTIs) can coexist for neurological patients, there are to date no description of concomitant injections (CIs) to treat both spasticity and neurogenic detrusor overactivity incontinence (NDOI) in patients with spinal cord injuries (SCIs) and multiple sclerosis (MS). We therefore identified patients followed at our institution by health data hub digging, using a specific procedure coding system in use in France, who have been treated at least once with detrusor and skeletal muscle BTIs within the same 1-month period, over the past 5 years (2017–2021). We analyzed 72 patients representing 319 CIs. Fifty (69%) were male, and the patients were mostly SCI (76%) and MS (18%) patients and were treated by a mean number of CIs of 4.4 ± 3.6 [1–14]. The mean cumulative dose was 442.1 ± 98.8 U, and 95% of CIs were performed within a 72 h timeframe. Among all CIs, five patients had symptoms evocative of distant spread but only one had a confirmed pathological jitter in single-fiber EMG. Eleven discontinued CIs for surgical alternatives: enterocystoplasty (five), tenotomy (three), intrathecal baclofen (two) and neurotomy (one). Concomitant BTIs for treating both spasticity and NDOI at the same time appeared safe when performed within a short delay and in compliance with actual knowledge for maximum doses. [ABSTRACT FROM AUTHOR]

Abstract Background Digital transformation in healthcare and the growth of health data generation and collection are important challenges for the secondary use of healthcare records in the health research field. Likewise, due to the ethical and legal constraints for using sensitive data, understanding how health data are managed by dedicated infrastructures called data hubs is essential to facilitating data sharing and reuse. Methods To capture the different data governance behind health data hubs across Europe, a survey focused on analysing the feasibility of linking individual-level data between data collections and the generation of health data governance patterns was carried out. The target audience of this study was national, European, and global data hubs. In total, the designed survey was sent to a representative list of 99 health data hubs in January 2022. Results In total, 41 survey responses received until June 2022 were analysed. Stratification methods were performed to cover the different levels of granularity identified in some data hubs’ characteristics. Firstly, a general pattern of data governance for data hubs was defined. Afterward, specific profiles were defined, generating specific data governance patterns through the stratifications in terms of the kind of organization (centralized versus decentralized) and role (data controller or data processor) of the health data hub respondents. Conclusions The analysis of the responses from health data hub respondents across Europe provided a list of the most frequent aspects, which concluded with a set of specific best practices on data management and governance, taking into account the constraints of sensitive data. In summary, a data hub should work in a centralized way, providing a Data Processing Agreement and a formal procedure to identify data providers, as well as data quality control, data integrity and anonymization methods.

As multiple indications for botulinum toxin injections (BTIs) can coexist for neurological patients, there are to date no description of concomitant injections (CIs) to treat both spasticity and neurogenic detrusor overactivity incontinence (NDOI) in patients with spinal cord injuries (SCIs) and multiple sclerosis (MS). We therefore identified patients followed at our institution by health data hub digging, using a specific procedure coding system in use in France, who have been treated at least once with detrusor and skeletal muscle BTIs within the same 1-month period, over the past 5 years (2017–2021). We analyzed 72 patients representing 319 CIs. Fifty (69%) were male, and the patients were mostly SCI (76%) and MS (18%) patients and were treated by a mean number of CIs of 4.4 ± 3.6 [1–14]. The mean cumulative dose was 442.1 ± 98.8 U, and 95% of CIs were performed within a 72 h timeframe. Among all CIs, five patients had symptoms evocative of distant spread but only one had a confirmed pathological jitter in single-fiber EMG. Eleven discontinued CIs for surgical alternatives: enterocystoplasty (five), tenotomy (three), intrathecal baclofen (two) and neurotomy (one). Concomitant BTIs for treating both spasticity and NDOI at the same time appeared safe when performed within a short delay and in compliance with actual knowledge for maximum doses.

Background: Digital transformation in healthcare and the growth of health data generation and collection are important challenges for the secondary use of healthcare records in the health research field. Likewise, due to the ethical and legal constraints for using sensitive data, understanding how health data are managed by dedicated infrastructures called data hubs is essential to facilitating data sharing and reuse. Methods: To capture the different data governance behind health data hubs across Europe, a survey focused on analysing the feasibility of linking individual-level data between data collections and the generation of health data governance patterns was carried out. The target audience of this study was national, European, and global data hubs. In total, the designed survey was sent to a representative list of 99 health data hubs in January 2022. Results: In total, 41 survey responses received until June 2022 were analysed. Stratification methods were performed to cover the different levels of granularity identified in some data hubs' characteristics. Firstly, a general pattern of data governance for data hubs was defined. Afterward, specific profiles were defined, generating specific data governance patterns through the stratifications in terms of the kind of organization (centralized versus decentralized) and role (data controller or data processor) of the health data hub respondents. Conclusions: The analysis of the responses from health data hub respondents across Europe provided a list of the most frequent aspects, which concluded with a set of specific best practices on data management and governance, taking into account the constraints of sensitive data. In summary, a data hub should work in a centralized way, providing a Data Processing Agreement and a formal procedure to identify data providers, as well as data quality control, data integrity and anonymization methods. [ABSTRACT FROM AUTHOR]

Introduction: French Public Health Insurance gathers health, demographic and economic data based on codes from the 10th version of the international classification of diseases (ICD-10), specific nomenclature for each health-care (medical or surgical) procedures, medical expenses and justifications for full coverage of medical care. We aimed to build an algorithm that could identify the French population of people living with spinal cord injury (SCI) relying on public health insurance metadata., Material and Methods: The SNDS (in French, Système National des Données de Santé) was searched for the time-period 2012-2019, looking for: full-coverage motives, ICD-10 codes, and health-therapeutic procedures specific of our population of interest. We built a step-by-step algorithm that identified i)including codes, ii)excluding codes, iii)codes needing confirmation. A group of 3 physicians recognized as experts in this field contributed with data scientists to the selection of pertinent codes and their association. Including codes were ALD-20 (full-coverage 'paraplegia', in French, Affection de Longue Durée), G114 (spastic paraplegia), Q05.x (spina bifida), spinal cord trauma (S14.x; S24.x), vascular myelopathy (G951), degenerative myelopathies (M47.x). Autoimmune, other disabling neurological diseases with a specific ICD code, and oncologic patients were excluded. Neurological symptoms (G82.x) needed confirmation. We identified 6 categories of SCI regarding their etiology, based on ICD-10 code combinations (congenital, genetic, tumoral, traumatic, acquired and symptomatic) Finally antibiotics consumption and hospitalizations of persons identified as SCI were compared to a control sample from overall population (with a 1:5 ratio)., Results: Among almost 245 000 persons with putative SCI, we identified 133 849 living individuals with SCI aged>16 (55.8% men, age 57 yo [44;70]) by 2019. Confirmed traumatic SCI were 21 459 (67% were men, age 53 yo [39;67]), acquired non-traumatic were the most frequent (n=62 561, 46.7%). SCI consumed 1.5 to 3-times more antibiotics and were 4-fold more hospitalized than controls. Also, when hospitalized, they remained twice longer in rehabilitation facilities and 3-times longer in acute care., Conclusion: Using multiple code entries, our algorithm allowed an exhaustive identification of the French adult SCI population, with an updated epidemiology. This innovative method opens the field for large-scale studies regarding medical history of persons living with SCI by the prism of medical expenses and habits., (Copyright © 2024 Elsevier Masson SAS. All rights reserved.)

Background: Rare diseases (RDs) affect nearly 3 million people in France and at least 26-30 million people in Europe. These diseases, which represent a major medical concern, are mainly of genetic origin, often chronic, progressive, degenerative, life threatening and disabling, accounting for more than one third of all deaths occurring during infancy. In this context, there are needs for coordinated information on RDs at national/international levels, based on high quality, interoperable and sharable data. The main objective of the RaDiCo (Rare Disease Cohorts) program, coordinated by Inserm, was the development of RD e-cohorts via a national platform. The cohort projects were selected through a national call in 2014. The e-cohorts are supported by an interoperable platform, equivalent to an infrastructure, constructed on the "cloud computing" principle and in compliance with the European General Data Protection Regulation. It is dedicated to allow a continuous monitoring of data quality and consistency, in line with the French Health Data Hub.Results: Depending on cohorts, the objectives are to describe the natural history of the studied RD(s), identify the underlying disease genes, establish phenotype-genotype correlations, decipher their pathophysiology, assess their societal and medico-economic impact, and/or identify patients eligible for new therapeutic approaches. Inclusion of prevalent and incident cases started at the end of 2016. As of April 2021, 5558 patients have been included within 13 RD e-cohorts covering 67 diseases integrated in 10 European Reference Networks and contributing to the European Joint Program on RDs. Several original results have been obtained in relation with the secondary objectives of the RaDiCo cohorts. They deal with discovery of new disease genes, assessment of treatment management, deciphering the underlying pathophysiological mechanisms, diagnostic approaches, genotype-phenotype relationships, development and validation of questionnaires relative to disease burden, or methodological aspects.Conclusion: RaDiCo currently hosts 13 RD e-cohorts on a sharable and interoperable platform constructed on the "cloud computing" principle. New RD e-cohorts at the European and international levels are targeted. [ABSTRACT FROM AUTHOR]

Big Data and Artificial Intelligence can profoundly transform medical practices, particularly in oncology. Comprehensive Cancer Centers have a major role to play in this revolution. With the purpose of advancing our knowledge and accelerating cancer research, it is urgent to make this pool of data usable through the development of robust and effective data warehouses. Through the recent experience of Comprehensive Cancer Centers in France, this article shows that, while the use of hospital data warehouses can be a source of progress by taking into account multisource, multidomain and multiscale data for the benefit of knowledge and patients, it nevertheless raises technical, organizational and legal issues that still need to be addressed. The objectives of this article are threefold: 1. to provide insight on public health stakes of development in Comprehensive Cancer Centers to manage cancer patients comprehensively; 2. to set out a challenge of structuring the data from within them; 3. to outline the legal issues of implementation to carry out real-world evidence studies. To meet objective 1, this article firstly proposed a discussion on the relevance of an integrated approach to manage cancer and the formidable tool that data warehouses represent to achieve this. To address objective 2, we carried out a literature review to screen the articles published in PubMed and Google Scholar through the end of 2022 on the use of data warehouses in French Comprehensive Cancer Centers. Seven publications dealing specifically with the issue of data structuring were selected. To achieve objective 3, we presented and commented on the main aspects of French and European legislation and regulations in the field of health data, hospital data warehouses and real-world evidence.