Find out more about current, future and completed projects.
The main objective of the FAP project is to enable analysis of data from individual registries, many of which are not allowed to leave the country of origin because of data safety rules. The FAP uses a distributed model, similar to meta-analysis, where all individual data remain in the host institution while summary aggregate statistical analysis results (using data available in individual registries) are brought together, resulting in powerful and clinically meaningful results.
SHARP Central is a central registry of people with severe asthma in 28 European countries founded by the SHARP CRC to facilitate countries that did not yet have their own severe asthma registry, thereby saving time and funding and quickly becoming active.
Properties of the SHARP Central registry are:
- each member country has its own database
- each country has unrestricted access to its own data
- a fixed set of pseudonymised patient data is entered via a uniform electronic case report form (e-CRF) with annual follow-up
- data are suitable for communication with the SHARP federated analysis platform.
Main objective: to understand the impact of oral corticosteroid drugs on the health economic aspects of severe asthma management, enable the existing the Italian Budget Impact model for such analysis using Italian registry (SANI) data (already published) to be used in a wider European context.
Projects Leaders: Thomas Paulsson, Arnaud Bourdin, Enrico Heffler
Main objective: to investigate the real-life impact on the quality of life of living with severe asthma across 11 European countries. The study is collecting longitudinal data to assess changes in Health-related Quality of Life (HRQoL) via the PatientCoach app or online questionnaires during a 12-month period and is comparing this with other outcome measures, such as asthma control and exacerbations, from the SHARP registry data.
Project Leaders: Matthew Masoli, Jacob Sont, Joseph Lanario
Main objective: to evaluate patients’ perception of COVID-19 vaccination and understand their vaccination status, hesitancy to vaccination, and impact of vaccination on patients’ asthma.
Project Leaders: Apostolos Bossios, Michael Hyland
This is a programme that aims to provide better understanding of different disease mechanisms of asthma and bring awareness of specific asthma phenotypes by focusing both on very rare asthma cases as well as series of lookalike cases with similar phenotypic features.
Project Leaders: Celeste Porsbjerg
Project Leader: Ramesh Kurukulaaratchy
Project Leaders: Alessandro Marcon & Marco Caminati, Italy
Project Leaders: Jacob Sont & Anneke ten Brinke, Netherland
Project Leaders: Matthew Masoli, Joseph Lanario, Prof Michael Hyland & Rupert Jones, UK
Main objective: to understand the use of the anti-IL-5 biologic, mepolizumab, in usual clinical practice (as opposed to clinical trials) and assess the benefits for the mepolizumab-using patient population. The results will help determine which patients starting treatment are likely to benefit most from mepolizumab to control their disease.
Project Leaders: Hans Kroes, Elisabeth Bel, Anneke ten Brinke
Main objective: to compare the current availability and the rules and criteria of prescription of biologics in European countries.
Project Leaders: Renaud Louis, Anne-Noelle Frix
This was a cross-sectional retrospective analysis of aggregated data from 11 national severe asthma registries that joined SHARP with established patient databases.
The study aimed to compare characteristics of patients in European severe asthma registries and treatments before starting biologicals
First and last authors: Job J.M.H. van Bragt, Anke-Hilse Maitland-van der Zee
Main objective: to increase understanding of the impact of COVID-19 on people with severe asthma so as to provide clear, informed guidance to patients, physicians, national societies, and healthcare systems to be prepared for possible future waves of COVID-19.
Project Leaders, Katrien Eger, Dora Paroczai
Main objective: to identify discrepancies between patients and physicians regarding patients’ most bothersome symptoms or problems and to assess whether they are well reflected in the current registries.
Project leaders: Namhee Kwon, Vratislav Sedlak, Ben Ainsworth
Main Objectives: Explore characteristics of anti-IL5(R) starters in different SHARP central registries and compare characteristics of patients before start with anti-IL5(R) across different SHARP central registries with the RCTs. In addition the project aimed to explore the potential discrepancies between real-life initiation of anti-IL5(R) versus eligibility for trials in patients with severe asthma from different European countries.
Project Leader: Stefania Principe, Netherland