Duchenne Data Platform (DDP) is a collaboration between Duchenne Parent Project and Foundation 29, a non-profit organization, with the aim of bringing the data back to the patients and their parents/caregivers. DDP has been developed to store data simply but in a very secure environment.
Your own information always with you and answers to questions
On the Duchenne Data Platform, you can store and manage all your healthcare data from the various healthcare institutions in your own locker. This way, you not only always have your data at hand, but you can also get answers to questions about the entire group, from several countries, and get answers to frequently asked questions. If you don’t have an account yet, create one here.
Amplifying the patient’s voice through collected data
Thanks to the data of our children and/or yourself, we have a joint and strong voice in advocacy. Via the Duchenne Data Platform, you can also participate in research related to daily life with the aim of finding out what deserves more attention. With your permission, this data can also be used to answer questions about, for example, approval of medicines and access to them. Thanks to European regulations, every patient has the right to access their own data and that data must be provided to you on request so that you can add it to your other data on the Duchenne Data Platform. Current European legislation with regard to medical data puts the patient first and so does the Duchenne Data Platform.
Duchenne Data Platform is seen as an example for other registrations
At the request of the European Medicines Agency, the Duchenne Data Platform was presented at a meeting of the Patients and Consumers Working Party (PCWP) and Healthcare Professionals Working Party (HCPWP).
The Duchenne Data Platform is an example within an EU-funded EURO-NMD registry hub project.
The platform is available via the web or as an app on mobile devices to make it easy for patients and their families to access your data.
Go to the Duchenne Dataplatform and create an account. Click below on the step-by-step plan on how to register on the Duchenne Data Platform.
To do this, click on “create user” at the bottom, then enter your name, email, a password and organization (Duchenne Parent Project International). Then you agree to the terms and conditions and activate your new account in your email inbox including the Authy app on your phone to secure your account.