We thank all posters’ authors for their hundreds of high quality submissions!
Posters abstracts were reviewed by the ECRD 2022 Poster Committee and notifications of acceptance were sent to all poster authors on 17th May.
Please note that presenting authors of all accepted posters need to REGISTER for the event – paying the full registration fees – and attend the conference.
The authors of the four top scoring posters will present their poster live at the conference (Monday, 27th June 16:00-17:00 CET).
- “A long-term, prospective, multicenter, in clinic and online disease monitoring program (DMP) for patients with long-chain fatty acid oxidation disorders (LC-FAOD)”, Ultragenyx Pharmaceutical Inc.
- “Work participation in adults with rare diseases – a systematic scoping review of relevant research”, TRS National Resource Center for Rare Disorders
- “Using ADDIE learning model to design a multidisciplinary educational program centered on rare diseases addressed to high-school students in Romania”, Babeș- Bolyai University Cluj-Napoca
- “Operational Description of Rare Diseases – A common reference to improve the recognition and visibility of rare diseases”, Rare Diseases International
All the other accepted posters will be showcased on the event platform in a multimedia format and made available to all attendees, who will be able to interact directly with authors by chat or by scheduling a meeting.
We encourage posters authors to connect regularly to the event’s platform throughout the conference week to check their messages and meeting requests. The Networking Sessions and open Networking Lounge will also be perfect opportunities to discuss with fellow attendees about posters.
Posters scoring criteria
1) Relevance of the topic to rare diseases
- Relevance, currency (how new/recent/up-to-date the information/study is), significance and appropriateness to the conference/theme
- Practical application to the field
2) Quality of content
- Clarity of the title
- Concision, coherence and clarity of content (summary of purpose and methodology, results, conclusions, next steps/practical application, etc.)
- Methodology of the given study/poster
- Originality (posters can be presented at other conferences prior to ECRD 2022)
- Commercial product promotion
- Disregard for above guidelines
- Submission after the deadline
- Incorrect submission channel (must use the online form)
GOOD HEALTH AND WELL-BEING
Ensuring healthy lives and promoting well-being for all people living with a rare disease at all ages
We invite health authorities, clinicians, patient representatives, patient organisations and industry to provide examples of:
1. Initiatives to collect and use health outcomes to identify emerging best practice, develop clinical practice guidelines and other clinical decision support tools
2. Initiatives of patient-clinician partnership in developing clinical practice guidelines and other clinical decision support tools, as well as curating best practice on the treatment and management of rare diseases
3. Initiatives of patient/researchers in co-developing research projects in the field of rare diseases
4. Initiatives to integrate and adopt ERN knowledge assets at a national level
5. Promising innovations and best practices in how care for rare diseases is being delivered or organised in your health system, including initiatives to commission healthcare services for ultra rare diseases
6. Examples of guidelines to develop and build effective allied treatments, technologies and interventions when no curative treatment is available
7. Case studies of health systems arrangements to deliver advanced therapy medicinal products
8. Initiatives to get health systems ready to implement/adopt diagnostic testing technologies addressing also downstream needs, such as new organisational arrangements to treat the increasing amount of people diagnosed
9. Case studies from institutions on newborn screening and/or nation-wide pre-conception screening and databases, including ethical and societal aspects
10. Reports on combined and novel approaches to diagnosis in a research and/ or clinical setting (including basic science type research and/or the use of new technologies
Reduce inequality within and among countries by focusing on equity for people living with a rare disease
We are seeking successful examples on a national or regional level of policies, best practices or pilot projects in the following areas:
- Measurement of the everyday challenges of PLWRDs in society (discrimination/stigma/exclusion; financial strain, access to appropriate care, education, recreation or employment).
- The role of data and supporting infrastructures in reducing inequality for PLWRD
- Studies measuring the socioeconomic burden of rare diseases (individual disease or cumulative)
- The role of National Plans and governance in reducing inequality for PLWRD
Health and social care:
- Integrated or holistic care models
- Case management
- Personal assistance
- Respite care, resource centres and networks
- Speech therapy
- Successful models for the transition from children to adults in health and social care settings
- Good examples of inclusive education: trained professionals, adapted infrastructure, reasonable accommodation, adapted curriculum, use of technology
- Good examples of adapted school environments for persons with physical health issues that need managing at school eg in meal times
- Good examples of integration into social activities and management of emotional, behavioural and learning issues within the school setting
- Initiatives to develop skills to become employable
- Examples of how the work environment, the practices at work or the interactions with colleagues have to change to enable someone with a disability or a rare disease to be integrated at work
- Good example of adaptable work environments for individuals dealing with survivorship
- Initiatives to support the return to employment of carers
INDUSTRY, INNOVATION & INFRASTRUCTURE
Building resilient infrastructure, promoting inclusive and sustainable industry and fostering innovation for people living with a rare disease
We invite all stakeholders active in the rare disease community to provide examples of:
- Examples of innovative public-private initiatives
- Initiatives to leverage RWD for research and access
- New approaches to medicines price setting
- Examples of cross-country collaboration on assessment / procurement of therapies
- Investment in rare diseases
- Environmental, social and governance initiatives in the field of rare diseases (i.e. B. corp, social bond etc.)
- Initiatives moving towards Clinical Research Networks
We invite all stakeholders active in the rare disease community to provide examples of:
- Examples of successful partnerships for health data collection and/or use
- Examples of health data governance structures to manage health data collection, access and use at national level or across borders, including ethics oversight, data standards, data policies and procedures for quality control data collection and use of data sets.
- Successful initiatives that combine different types of data from different sources for different purposes: to drive health policy, support health technology assessment and regulatory decision-making, advance rare disease research, improve diagnosis, hospital management or healthcare delivery.
- Initiatives to develop and/or curate patient reported outcome measures and patient reported experience measures for rare diseases
- Examples of using health data, including real world evidence, patient reported outcome measures and/or patient reported experience measures, in rare disease research or to improve clinical practice and health outcomes.
- Examples of successful health data support infrastructures or tools for researchers and clinicians that have contributed to reduce the time from data collection to knowledge and insights.
- Examples of innovative solutions or initiatives to help preserve the autonomy and rights of individuals to control their data enabling stewardship of patient-level data
- Successful examples of tools to facilitate coding, health data visualisation tools, health data quality tools/methodologies and tools to transform and process unstructured health data into structured data to support clinical research and practice.
RARE DISEASE PATIENT GROUPS INNOVATIONS
Innovative strategies/approaches/services or projects which could potentially be useful to other patient groups/healthcare professionals/academia or which deserve to be promoted internationally and recognised by national and European authorities.
What would you like to say about your disease, your actions, your vision?
Authors of selected abstracts will be able to create an interactive and sharable e-poster within a dedicated virtual platform that will be showed at the Conference. All the following multimedia formats will be accepted: