The development of innovative technologies has introduced new ways of data collection in healthcare research and development and is impacting and improving the whole patient journey. Timing and accuracy of data are key components to the efficiency, speed, and therefore overall costs of a clinical trial. Wearable devices enable consumers to passively track their health accelerating the timeliness and increasing the accuracy of the information collected. We can assume that the successful implementation of innovative technology in clinical trials generates both cost savings and collection of more data than researchers ever imagined possible. We are in the middle of a transition and starting by using wearables in observational studies could be the right way to develop solid endpoints and methodologies. Availability of data regarding physical activity is compelling for certain categories of patients, such as the Hemophiliac patients. Taking in account these two considerations we have designed a national observational study on the Italian hemophilic population, the POWER study. The data collection will be done mainly through a wearable and a patient’s app, with only a limited physician’s contribution. The app was co-created with the patient’s associations and the development was supported by the innovation lab of Bocconi university. The idea is to use the data collected to develop a personalized “activity fingerprint” for the hemophilic patient.
Alessandra Ghirardini has been working for Roche since 2015 and is currently Rare Diseases Medical Unit Head. Since February 2018, she coordinates a team of Medical Manager and MSL dedicated to molecules developed for patients with rare diseases, both in respiratory field (i.e. Idiopathic Pulmonary Fibrosis and Cystic Fibrosis) and hematology field (Haemophilia A). Alessandra graduated in Chemistry and Pharmaceutical Technologies and has been working in pharmaceutical companies since 1998. Before joining Roche, Alessandra worked for Boehringer Ingelheim covering several roles. She started in field roles, followed by a training manager role, and in 2010 Alessandra approached the Medical Affairs Department, initially covering the role of MSL in cardiology, and then in 2011 she began her experience in rare diseases field as Medical Manager. In Roche, before the current one, she held the position of Disease Area Leader.