Several members of the PaLaDIn team travelled to Lisbon in February to attend TREAT-NMD’s 8th International Conference and Annual Curators Meeting. The conference brought together experts from across research, clinical care, industry, patient advocacy, and regulatory work for two days of open, forward-looking discussions. This year’s conference theme, “Addressing Challenges in a Changing World”, helped to guide these discussions, and highlighted the collective determination to overcome barriers in neuromuscular research and care. The conference included a session to present the PaLaDIn project and an additional PaLaDIn poster presentation demonstrating how PaLaDIn is addressing these challenges by developing and implementing an innovative data collection platform to accelerate the development of effective treatments and patient care, enhance healthcare decision-making, and improve patient outcomes.
TREAT-NMD also hosted a PaLaDIn stall within the dedicated exhibition space at the conference, engaging with visitors from across the conference to share details of PaLaDIn, including the aims of the project, progress to date, and our vision for the future. Many who visited the stall commented on how exciting these developments are, and how keen the community is to see the end results and get involved with the Interactium® platform. The stall also provided an opportunity to conduct guided interviews with patients, industry and researchers to understand the problems currently faced when collecting data, and how the Interactium® can help in the future.
Prior to the TREAT-NMD conference, the PaLaDIn team led a session within the Annual Curators Meeting to provide an update on PaLaDIn and the development of the Interactium® to registry curators from around the world. Additionally, a workshop was held to gather feedback on the planned features of the Interactium®, and to build momentum towards the launch of the platform. The session and workshop were both a great success and have provided us with valuable insights to shape the platform development.
In addition to the PaLaDIn session and workshop, an interactive workshop took place with several registry curators, focusing on the ongoing development of new datasets in FSHD and DM being carried out within PaLaDIn. The team demonstrated progress to date, highlighting the consensus model being used to develop the datasets, and the data items already proposed for inclusion. Using a multi-stakeholder, consensus-based methodology is particularly important in rare diseases where patients and knowledge can be scarce.
Finally, TREAT-NMD hosted an important meeting with representatives of the PaLaDIn consortium, the subcontractors engaged to develop the Interactium® (Promptly Health), members of the recently formed Patient and Caregiver User Group (PCUG), and the Interactium® Futures Board (IFB). The IFB is a group of companies that work across the neuromuscular disease field brought together to advise on the collection and use of patient-reported data in decision-making in drug development, patient care and access to treatments to support development of the Interactium®.
This final session focused on some of the potential future use cases for the Interactium® and generated some more fantastic discussion and cross-pollination of ideas between the various groups present. The outputs of this are being used to help define the features and requirements that will go into the final Interactium® development.
