Posters

Poster abstracts submissions for the ECRD 2022 will open in December 2021 and will close at the end of March 2022.

 

Guidelines

  • Poster abstract submissions accepted in English only.
  • Poster abstract submissions are limited to 300 words.
  • You may be co-author of any number of poster abstracts but presenting author of only one.
  • Please indicate if your abstract has already been presented at other events.

 

Posters scoring

Posters will be scored using the following 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)

 

Disqualification criteria

  • Commercial product promotion
  • Disregard for above guidelines
  • Submission after the deadline
  • Incorrect submission channel (must use the online form)

 

Selection procedure

Posters abstracts will be reviewed by the ECRD 2022 Poster Committee in early April 2022 and notifications will be sent to all poster authors by the end of the month. Please note that poster applicants are not exempt from paying the full registration fees to attend ECRD 2022.

 

Poster themes

We encourage patient groups, academics, health care professionals and all other interested parties having conducted research or studies on rare diseases or public health projects to submit a poster abstract to the ECRD 2022.
The recommended themes below correspond to the topics included in the Programme and have been selected by the Programme Committee who would like to have these addressed. By clicking on the titles you will access more information that can serve as a valuable guide as you develop your poster abstract.

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 or 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

REDUCED INEQUALITIES


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:

Cross-cutting:

  • 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

Education:

  • 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

Employment:

  • 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

DATA/DIGITAL


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.

OPEN TOPIC


What would you like to say about your disease, your actions, your vision?

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