22/2/2021
Duchenne Data Platform and MakerLab join forces
MakerLab, part of MakerStreet, has joined the Duchenne Data Platform. Experiment designer Jip Warendorf is pro bono involved in the further development of the platform, intended as an information hub for Duchenne's disease.
The Duchenne Data Platform stems from the Duchenne Parent Project, founded in 1994 by Elizabeth Vroom after her then two-year-old son Justus was diagnosed with the rare Duchenne muscle disease. She set that up to accelerate research into treatment for the disease.
Duchenne occurs only in boys and there is no cure for it. With the continued development of the Duchenne Data Platform, the organization is now taking the next step.
Elizabeth Vroom: "When I initiated the Duchenne Parent Project, my primary focus was on fundraising. After all, researchers had identified the cause of Duchenne relatively swiftly. I thought, "Great, now they can search for a treatment." However, they ended up diverting their efforts towards identifying the causes of other rare diseases instead.
The funding for research had to come from parents. Over the years, we had collected so many valuable studies that more and more people were requesting them. We now receive assistance from 60 countries and collaborate with 40 different organizations."
One such organisation is Foundation 29. In partnership with this Spanish foundation, the data platform was established in 2018. The platform's objective is to amalgamate this data in a secure and user-friendly manner. This facilitates medical research and serves as a handy source of information for patients and their families. However, in reality, only a small number of individuals were entering their data.
Jip Warendorf, friend of Justus Vroom, decided to do something about it. For two years now, he has been working at MakerLab. As an experiment designer there, he gained the necessary experience in looking for concrete solutions to digital problems. This job was right up his alley and together with colleague Joeri de Graaf he set to work. In consultation with the director, they made it a pro bono project.
The needs of Duchenne families do not always align with the functionalities of the platform. Jip Warendorf and Joeri de Graaf are currently working on turning that insight into concrete improvements. In March, the platform will be translated into English and Spanish.
