Parent Project APS (PPI) – is an association of patients and parents with children affected by Duchenne and Becker muscular dystrophy. Since 1996, PPI has been working to improve the treatment, quality of life and long-term prospects of patients through research, education, training and awareness. PPI’s main goals are to support families affected by Duchenne and Becker muscular dystrophy, to promote and fund scientific research and to develop a cooperative network. Over time, the association has grown and has equipped itself with an organizational structure and staff. Parents and, nowadays, patients also play a central role at the decision-making level. PPI leads the Italian Duchenne Muscular Dystrophy and Becker Muscular Dystrophy patient registry

Ezio Magnano, President of Parent Project aps, talked to us about why PPI is involved in PaLaDIn:

“For years, one of our goals has been to collect patient data in the registry to enhance knowledge about the disease and to provide patients with useful and meaningful information. We care about patient empowerment. This is why we strive so that patients can be citizen scientists and able, through their data, to be key contributors to scientific progress, while also being primary users.  Paladin and its Interactium platform reflect these aspects that are crucial for us and provide the potential to further amplify the use a patient can make of his or her own data.”

PPI is Paladin Project’s coordinator, as well as its project management lead. PPI is also steering the ‘Patient Involvement and Engagement’ work package (WP), whose goal is to test the Interactium platform, produce educational materials, and improve and grow the collection of PROMs (Patient Reported Outcome Measures) and PREMs (Patient Reported Experience Measures) in the neuromuscular field.  Furthermore, Parent Project is also involved in the project’s communications and dissemination WP. To find out more about the goals of each PaLaDIn work package, click here.