Dementia with Lewy bodies research consortia: A global perspective from the ISTAART Lewy Body Dementias Professional Interest Area working group

Abstract

Dementia with Lewy bodies (DLB) research has seen a significant growth in international collaboration over the last three decades. However, researchers face a challenge in identifying large and diverse samples capable of powering longitudinal studies and clinical trials. The DLB research community has begun to focus efforts on supporting the development and harmonization of consortia, while also continuing to forge networks within which data and findings can be shared. This article describes the current state of DLB research collaborations on each continent. We discuss several established DLB cohorts, many of whom have adopted a common framework, and identify emerging collaborative initiatives that hold the potential to expand DLB networks and diversify research cohorts. Our findings identify geographical areas into which the global DLB networks should seek to expand, and we propose strategies, such as the creation of data-sharing platforms and the harmonization of protocols, which may further potentiate international collaboration.

(Dis‐)Connected Dots in Dementia with Lewy Bodies—A Systematic Review of Connectivity Studies

“…This development is facilitated by the recent establishment of large multicenter cohorts in different national and international consortia. 78 In conclusion, connectivity measures show great potential to capture brain disruptions in patients with DLB, possibly before regional volumetric differences can be observed. Tracing connectivity disruptions may be of particular importance given the often limited level of atrophy encountered in DLB, especially in its prodromal stage.…”

“…Apart from collecting multimodal data, future studies should place more emphasis on acquiring data in larger and better characterized patient populations, factoring in brain state, symptomatology, and medication use of individual patients. This development is facilitated by the recent establishment of large multicenter cohorts in different national and international consortia 78 …”

Dementia with Lewy Bodies Drug Therapies in Clinical Trials: Systematic Review up to 2022

“…Only 2 completed clinical trials included DLB patients in a South American site, and we did not find DLB clinical trials conducted in Africa or the Middle East. These results highlight the importance of global collaborations, data-sharing platforms, and partnerships between academic centers, patient advocacy groups, pharmaceutical companies, and government institutions as potential strategies to fill these gaps [38][39][40].…”

Listening session with the US Food and Drug Administration, Lewy Body Dementia Association, and an expert panel

“…7 Estimates suggest that the number of people with DLB could increase from 5.5 million to 14 million worldwide by 2050. 8 DLB causes significantly greater functional disability than AD. 9 Care costs for DLB are twice those for AD.…”

“…DLB is now estimated to be the most expensive dementia 7 . Estimates suggest that the number of people with DLB could increase from 5.5 million to 14 million worldwide by 2050 8 . DLB causes significantly greater functional disability than AD 9 .…”