D4.5 Report on results from ‘hypothesis-free’ disease trajectory analyses
31 May 2018
Early detection of Alzheimer’s disease is important as medication from early stages can attenuate symptoms, delay their onset, and improve quality of life. As many patients with dementia due to Alzheimer’s disease share chronic diseases and associated comorbidity patterns, we use frequent temporal disease trajectories to form more specific patient subgroups. The prior temporal disease history of these patients could possibly provide new insights for earlier detection and contribute to a core disease progression model.
D8.3 Brief on findings of ELSI focus groups for a RWE approach to AD (publishable summary)
14 May 2018
This deliverable reports results from:
- An updated literature review on empirical research into patient and publics attitudes to the secondary use of data. (Initially was completed as part of deliverable 8.2.)
- Findings from two focus groups conducted with people with dementia and their supporters to understand patient and carer attitudes towards the ethical, legal and social implications of a real world data platform for Alzheimer’s disease.
D2.2 Report of systematic review of published and unpublished data identifying important and relevant outcomes in AD and criteria for disease progression
26 Mar 2018
Alzheimer’s disease (AD) is the commonest cause of dementia. It has an enormous global impact and cost which both continue to grow while disease modifying treatments are sought. Identifying the real world outcomes of AD that matter most to key stakeholders will help ensure that future treatments effectively improve the lives of those affected.
D3.2 First report on proof of concept technical solutions for RWE data harmonisation and integration
25 Jan 2018
WP3 facilitates the work of WP2, 4 and 5 by identifying and providing access to relevant data sources for answering the research questions defined within ROADMAP. WP3 has developed a preliminary workflow to achieve this. After approval by the WP leads, ROADMAP researchers are required to fill in a specifically developed scientific research question form. This will be send to WP3, which then triggers the search for relevant data in all ROADMAP partner platforms. If the data are already uploaded to one of the platforms, data access can be provided fast, conditional on the approval of the data owners. Researchers can also identify data that are not yet included in one of the partner platforms. In this case, the data owner will be approached and asked for participation in the study.
D6.1 Interim report on the EXAG activities and outputs (publishable summary)
04 Jan 2018
This report outlines the background and membership of the Expert Advisory Group (EXAG), which has been established under Work Package 6, to ensure the relevance and usability of ROADMAP activities and outputs to regulators and HTA agencies throughout the project.
D2.2.1 Report of SLR of data identifying outcomes in AD and criteria for disease progression
19 Dec 2017
A group of systematic literature reviews is under way to collate all available evidence on which outcomes of Alzheimer’s disease (AD) are most important, and what constitutes a meaningful delay in its progression, from the perspectives of people with AD, their carers and healthcare professionals. A series of distinct but internally consistent, sensitive searches were undertaken to capture a broad evidence base. Specific inclusion criteria were applied to refine this to a coherent, relevant subset of information which answers our research questions. ROADMAP members of WP2 have screened and are now quality appraising full-text papers in preparation for data extraction and synthesis.
D2.3.1 Stakeholder generated lists of priority real world evidence relevant outcomes for Alzheimer’s disease
14 Dec 2017
A series of stakeholder activities is in process to define a priority set of real world dementia focussed outcomes across the disease spectrum and to define what constitutes a meaningful delay in disease progression. Effective collaboration with international partners in WP2 was undertaken to design and validate three separate surveys and workshop activities. Piloting the surveys has facilitated design improvements and identified potential technical issues, enabling surveys that will increase response rates at final implementation stage. Access to numerous distribution lists and memory clinics for Europe-wide survey distribution has been successfully negotiated. Data collection has commenced in a memory clinic in Girona, European-wide data collection from electronic surveys will commence shortly.
D7.4 Interim Report on dissemination activities and communication strategy update
08 Nov 2017
The present Interim Report on dissemination activities and communication strategy update aims to provide updated information on the communication tools developed early in the project. The achievements of these tools with regard to results of dissemination activities and their impact is evaluated.
D3.1 Overview of potential data sources with RWE data in Europe
15 May 2017
The identification and characterisation of the data sources in order to create a landscape of available real-world health care data is the first step to provide an understanding of currently available data for the relevant outcomes and outline potential gaps in currently available information about Alzheimer’s disease at various stages. Since the landscape of data should be sustainable information that is available for the current ROADMAP objectives as well as future research on the various stages of Alzheimer’s disease it should be documented in an accessible data source catalogue with curation and search features. For that purpose, the existing EMIF AD and EMIF EHR catalogues were selected as the preferred repositories, (https://emif-catalogue.eu/), but at the same time taking into account the different fingerprinting needs for cohort type and EHR/national register type data.
D7.3 Initial set of communication tools
24 Apr 2017
The following document aims to provide an update of the different communication tools and materials that were developed during the first six months of the ROADMAP project. The initial report on communication tools and material is based on different sections. The sections include a summary of the general communication strategy and its approach as outlined in Deliverable D7.2. Initial Communication Plan, including project branding and policies. In line with the objectives stated in the initial communication plan, the developed tools, that are part of the communication framework, aim at the optimisation of the communication within the project consortium. The collaboratively designed framework includes channels and tools which are further described regarding their dissemination impact whenever possible.
D7.1 Project website
13 Apr 2017
As a key step towards increasing the visibility and outreach of the ROADMAP project to the different audiences, a project website was developed by WP7 co-leads with contributions by WP7 partners and the broader ROADMAP consortium. The aim of the website is to present the ROADMAP project as a whole and to give updates on all ROADMAP activities and publications on an ongoing basis, as part of the project’s communication and dissemination activities (WP7).
D2.1 First list of priority RWE outcomes for AD
15 Mar 2017
We have produced a first list of real-world evidence (RWE) outcomes for Alzheimer’s disease across the spectrum, having drawn upon findings from literature and following consultation with some of our partners within the Consortium who are leading experts in their fields in both academia and industry. In the next stages of our work, we will prioritize outcomes and agree on criteria for meaningful delay in disease progression through synthesizing our findings from systematic reviews, stakeholder surveys, priority setting workshops and on-going collaboration within the Consortium.