92nd Edition – July 2019

EHDEN to launch first open data partner call

IMI’s EHDEN project is launching a call for data custodians to apply for funding to map their health data to the Observational Medical Outcomes Partnership common data model (OMOP CDM). EHDEN’s ambitious goal is to standardise more than 100 million patient records across Europe from different geographic areas and different data sources. Mapping this data to the OMOP CDM will facilitate their use for a variety of purposes, enhancing and accelerating research and healthcare decision-making for global benefit. In addition to funding, EHDEN data partners will benefit from being part of a thriving academic / medical network; more opportunities to participate in international studies; and improved interoperability and visibility of their data, among other things.

The call is currently in a draft form, and data custodians are invited to review the draft and provide feedback by 15 August. The EHDEN team will review feedback received and open the call for applications from 1 to 15 September.

Changing light levels a challenge for people with eye disease AMD

People with the eye disease age-related macular degeneration (AMD) struggle more with navigation under changing light levels than under constant low light conditions, according to initial results presented by the MACUSTAR project at the annual meeting of the Association for Research in Vision and Ophthalmology (ARVO). If the findings are confirmed in a larger group of patients, they will give us a better understanding of the impact of lighting on navigation and other everyday activities in people with AMD. People with dry age-related macular degeneration (AMD) gradually lose their central vision, usually in both eyes. It is a leading cause of blindness worldwide. However, as patients retain peripheral vision, the disease is not thought to affect mobility. In this study, people with AMD navigated their way around an obstacle-strewn maze at different light levels: 256 lux (equivalent to muted office lighting); 4 lux (equivalent to a road lit by streetlamps at night); and 1 lux (equivalent to moonlight). They also navigated the maze as the light level fell from 256 lux to 1 lux. While the participants’ performance was similar when navigating while the light level remained stable, it was a lot worse while navigating under changing light conditions. Their walking speed dropped by an average of 19 % compared to the 256 lux maze, and they experienced more mobility and orientation errors. The project is now gathering further data to confirm their findings and analyse if and how performance differs for patients at different stages of the disease. They will also verify if the findings at the two centres used (in Paris and London) are comparable. The research was led by Dr Hannah Dunbar of UCL and Ariel Zenouda of StreetLab, Paris – watch a short video where Dr Dunbar describes her work in MACUSTAR.

Join the Patient Engagement Open Forum

On 18-19 September, IMI projects PARADIGM and EUPATI are joining forces with Patient Focused Medicines Development (PFMD) to organise the Patient Engagement Open Forum in Brussels, Belgium. The aim of the event is to provide a holistic perspective of patient engagement, the landscape and actors, and foster collaboration and co-creation while breaking down fragmentation and silos that are often present in patient engagement work. The agenda offers a deep dive into some ongoing patient engagement work done by many collaborative initiatives. Topics range from tools and recommendations for effective patient engagement, methods for monitoring and evaluation of impact and outcomes in patient engagement activities, and fair market compensation for patient input to interactive sessions on assessing good practices in patient engagement and more. Registration is free but obligatory.