Privacy-Preserving Linkage of Distributed Pseudonymised Datasets in a Virtual European Rare Disease Platform.

Secondary use of data for research purposes is especially important in rare diseases (RD), since, per definition, data are sparse. The European Joint Programme on Rare Diseases (EJP RD) aims at developing an RD infrastructure which supports the secondary use of data. Significant amounts of RD data are a) distributed and b) available only in pseudonymised format.

Use Cases Requiring Privacy-Preserving Record Linkage in Paediatric Oncology.

Large datasets in paediatric oncology are inherently rare. Therefore, it is paramount to fully exploit all available data, which are distributed over several resources, including biomaterials, images, clinical trials, and registries. With privacy-preserving record linkage (PPRL), personalised or pseudonymised datasets can be merged, without disclosing the patients' identities.

Immediate Effects of Lower Limb Sensory Simulation Using Smart Socks to Stabilize Gait in People with Parkinson's Disease.

People with Parkinson's disease (PD) experience gait impairment that can lead to falls and poor quality of life. Here we investigate the feasibility of using smart socks to stimulate the lower limbs of people with PD to reduce excessive step time variability during walking. We hypothesised that rythmic excitation of lower limb afferents, matched to a participant's comfortable pace, would entrain deficient neuro-muscular signals resulting in improved gait.

Integration of Python Modules in a MATLAB-Based Predictive Analytics Toolset for Healthcare.

Background: Python and MATLAB both are common tools used for predictive modelling applications, not only in healthcare. In our predictive modelling group, both tools are widely used. None of the two tools is optimal for all tasks along the value chain of predictive modelling in healthcare.

A Smartphone-Based Model of Care to Support Patients With Cardiac Disease Transitioning From Hospital to the Community (TeleClinical Care): Pilot Randomized Controlled Trial.

Background: Patients hospitalized with acute coronary syndrome (ACS) or heart failure (HF) are frequently readmitted. This is the first randomized controlled trial of a mobile health intervention that combines telemonitoring and education for inpatients with ACS or HF to prevent readmission.

Objective: This study aims to investigate the feasibility, efficacy, and cost-effectiveness of a smartphone app-based model of care (TeleClinical Care [TCC]) in patients discharged after ACS or HF admission.

Trials and Tribulations: mHealth Clinical Trials in the COVID-19 Pandemic.

Introduction: Mobile phone-based interventions in cardiovascular disease are growing in popularity. A randomised control trial (RCT) for a novel smartphone app-based model of care, named TeleClinical Care - Cardiac (TCC-Cardiac), commenced in February 2019, targeted at patients being discharged after care for an acute coronary syndrome or episode of decompensated heart failure. The app was paired to a digital sphygmomanometer, weighing scale and a wearable fitness band, all loaned to the patient, and allowed clinicians to respond to abnormal readings.

Investigation of the Role of Dinutuximab Beta-Based Immunotherapy in the SIOPEN High-Risk Neuroblastoma 1 Trial (HR-NBL1).

To explore the effects of immunotherapy in the International Society of Paediatric Oncology Europe Neuroblastoma Group SIOPEN high-risk neuroblastoma 1 trial (HR-NBL1 trial), two cohorts were studied: one prior to and one after the introduction of dinutuximab beta. All patients received standard induction and high-dose therapy (HDT) with autologous stem cell rescue (ASCR); the local control comprised surgery and radiotherapy to the primary tumour site, followed by isotretinoin. A landmark timepoint of 109 days, resulting from the median time between ASCR and initiation of immunotherapy, was used to define patients' eligibility in the pre-immunotherapy analysis cohort.

Interleukin 2 with anti-GD2 antibody ch14.18/CHO (dinutuximab beta) in patients with high-risk neuroblastoma (HR-NBL1/SIOPEN): a multicentre, randomised, phase 3 trial.

Background: Immunotherapy with the chimeric anti-GD2 monoclonal antibody dinutuximab, combined with alternating granulocyte-macrophage colony-stimulating factor and intravenous interleukin-2 (IL-2), improves survival in patients with high-risk neuroblastoma. We aimed to assess event-free survival after treatment with ch14.18/CHO (dinutuximab beta) and subcutaneous IL-2, compared with dinutuximab beta alone in children and young people with high-risk neuroblastoma.

A small-scale randomised controlled trial of home telemonitoring in patients with severe chronic obstructive pulmonary disease.

Introduction This was a pilot study to examine the effects of home telemonitoring (TM) of patients with severe chronic obstructive pulmonary disease (COPD). Methods A randomised controlled 12-month trial of 42 patients with severe COPD was conducted. Home TM of oximetry, temperature, pulse, electrocardiogram, blood pressure, spirometry, and weight with telephone support and home visits was tested against a control group receiving only identical telephone support and home visits.

Piloting the European Unified Patient Identity Management (EUPID) Concept to Facilitate Secondary Use of Neuroblastoma Data from Clinical Trials and Biobanking.

Data from two contexts, i.e. the European Unresectable Neuroblastoma (EUNB) clinical trial and results from comparative genomic hybridisation (CGH) analyses from corresponding tumour samples shall be provided to existing repositories for secondary use.

Textual analysis of collaboration notes of the telemedical heart failure network HerzMobil Tirol.

Unlabelled: Management of heart failure is usually multidisciplinary and collaboration between stakeholders in a dedicated HI network like the HerzMobil Tirol can be supported by a mHealth-based telemedicine approach. The aim is to gain insights through textual analysis of collaboration notes that might trigger further developments and improvements of the HI network. A reusable pipeline for textual analysis of unstructured textual notes was implemented using the open source analytics software KNIME.

Feasibility of mHealth and Near Field Communication technology based medication adherence monitoring.

Poor patients' adherence to intake of prescribed medication has been identified as a serious problem in the treatment of chronically ill patients. Technical solutions are needed to measure and - if necessary - to increase the patients' adherence. A telemonitoring solution was developed to record a patient's medication intake based on smart blisters and mobile phones with NFC functionality.

Effect of home-based telemonitoring using mobile phone technology on the outcome of heart failure patients after an episode of acute decompensation: randomized controlled trial.

Background: Telemonitoring of patients with chronic heart failure (CHF) is an emerging concept to detect early warning signs of impending acute decompensation in order to prevent hospitalization.

Objective: The goal of the MOBIle TELemonitoring in Heart Failure Patients Study (MOBITEL) was to evaluate the impact of home-based telemonitoring using Internet and mobile phone technology on the outcome of heart failure patients after an episode of acute decompensation.

Methods: Patients were randomly allocated to pharmacological treatment (control group) or to pharmacological treatment with telemedical surveillance for 6 months (tele group).

A Web-based platform for interdisciplinary biomedical research.

The European Neuroblastoma Group of the International Society for Paediatric Oncology (SIOPEN) is dedicated to the research and treatment of neuroblastoma. The medical research network SIOPEN-R-NET is an extensive web-based European IT network for interdisciplinary biomedical research. The IT infrastructure has been built using state-of-the-art multi-tiered architecture principles.

A pilot study of mobile phone-based therapy for obese patients.

We conducted a pilot study to assess the feasibility of a web-based therapy management system with mobile phone access to support obese patients. A total of 25 patients participated in the study. The mean age of the patients was 48 years.

Feasibility of a mobile phone-based data service for functional insulin treatment of type 1 diabetes mellitus patients.

Background: Patients with type 1 diabetes mellitus (DM1) have to be active participants in their treatment because they are inevitably responsible for their own day-to-day-care. Availability of mobile Internet access is advancing rapidly and mobile phones are now widely available at low cost. Thus, mobile phones have the potential to assist in daily diabetes management and to enable a telemedical interaction between patients and health care professionals.

Feasibility of a telemedicine framework for collaborative pacemaker follow-up.

We propose a telemedicine framework for remote and manufacturer independent pacemaker (PM) follow-up. The main goal is to provide the caregiver at the point-of-care with an efficient screening method to identify possible malfunction of the pacing system in collaboration with the specialist at the PM clinic. The concept was evaluated in a clinical trial on 44 patients (mean age 76 years).