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35 materials found

Resource type: e-learning 

and

Keywords: Rare Diseases & Research  or ELIXIR-CONVERGE 


Elaboración de un Plan de Gestión de Datos (DMP): teoria y práctica

PDF with slides of the course in Spanish:
- Data management definitions
- DMP Objectives
- DMP Content and structure
- Competencies needed
- Practical session: DMP content analysis and evaluation

Scientific topics: Data management, FAIR data

Keywords: ELIXIR-CONVERGE, DMP, data management plan, research data management, FAIR principles, DMP tools, DMP templates, tools, template, competency, DMP evaluation, evaluation, on-line, e-learning, Spanish

Resource type: PDF, e-learning, slideck/ presentation

Research Data Management Introduction for researchers

Short summary of the previous session
1.Scope of the DM
2.DMP Content and structure
Practical activities
3.Planning the DM of a simple project
4.DMP evaluation

Scientific topics: Data management, FAIR data

Keywords: ELIXIR-CONVERGE, DMP, data management plan, research data management, FAIR principles, DMP tools, DMP templates, tools, template, competency, DMP evaluation, evaluation, on-line, e-learning

Resource type: PDF, e-learning, slideck/ presentation

Data Management Plans and Policies

PDF with slides of the course:
- Data management definitions
- RDM and DM policy
- DMPs: content and competencies
- DMPs for European and National funded projects

Scientific topics: Data management, FAIR data

Keywords: ELIXIR-CONVERGE, DMP, data management plan, research data management, FAIR principles, DMP tools, DMP templates, tools, template, competency, on-line, e-learning

Resource type: PDF, e-learning, slideck/ presentation

Elaboración de un Plan de Gestión de Datos (DMP): teoria y práctica

PDF with slides of the course in Spanish
- Data management definitions
- DMP Objectives
- DMP Content and structure
- Competencies needed
- Practical session: DMP content analysis and evaluation

Scientific topics: FAIR data, Data management

Keywords: ELIXIR-CONVERGE, DMP, DMP tools, DMP templates, DMP evaluation, Data managment plan, research data management, FAIR principles, tools, template, competency, evaluation, online, e-learning, Spanish

Resource type: PDF, e-learning, slideck/ presentation

EJP RD MOOC "Diagnosing Rare Diseases: from the Clinic to Research and back"

Topics covered:
- The diagnostic process and the types of genetic tests available for rare diseases
- The differences in rare genetic diseases patient pathways
- Technological advances for diagnostic research
- The role of collaborative studies and data sharing in rare diseases diagnosis
-...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: e-learning

Eurordis Open Academy

Through the Open Academy, EURORDIS empowers patient advocates to have the confidence and knowledge needed to bring their expertise to discussions on health care, research and medicines development. EURORDIS alumni engage in these discussions as equal partners, side by side with policy makers,...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research, Rare Diseases

Resource type: course materials, e-learning

Educational webinars on rare endocrine conditions (ENDO-ERN)

The European Reference Network on rare endocrine conditions (Endo-ERN) aims to improve access to high-quality healthcare for patients with rare hormonal disorders.

Various webinar on rare endocrine conditions are proposed :
- Update on congenital adrenal hyperplasia
- Prophylactic...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, e-learning

Educational webinars on rare and complex epilepsies (EpiCARE ERN)

EpiCARE ERN (European Reference Network for rare and complex epilepsies) has launched a series of educational webinars presented by experts. The webinars are free to join from anywhere in the world, pre-registration is required.
Topics are related to epilepsy diagnostics and treatment and...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, e-learning

Postgraduate Curriculum in Rare Kidney Diseases developed by ERKNet

The European Reference Network for Rare Kidney Diseases (ERKNet), the European Society for Paediatric Nephrology (ESPN) and the International Pediatric Nephrology Association (IPNA) have since January 2020 launched a set of webinars.

They take place monthly on Tuesdays 4 pm CET (except summer...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, e-learning

Webinars from the European Reference Network in Rare Hematological Diseases (EuroBloodNet)

Webinars mainly address very rare diseases, complex disorders, highly specialized procedures and implementation of guidelines. At the same time, webinars' programs that are specifically addressed to patients intend to increase the awareness on a specific rare hematological disease among patients'...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, e-learning

Education and Training webinars on genetic tumor risk syndromes (ERN GENTURIS)

Target audience for the webinars are clinicians, genetic counsellors, clinical scientists and other genetics health professionals. The presentation itself lasts approximately 20-30 minutes, and viewers have the opportunity to send questions on the subject area which will be addressed in a...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, e-learning

Educational videos on rare and low prevalence complex diseases of the heart (ERN GUARD-Heart)

ERN GUARD-Heart (European Reference Network for Rare and Low Prevalence Complex Diseases of the Heart) propose educational videos for experts on the following topics:
- CPVT: Diagnosis and Risk; Treatment; ICD therapy
- HCM: Definition, etiology and diagnostic work-up
- Sudden cardiac death:...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Video, e-learning

Webinars on Hereditary metabolic diseases (MetabERN)

MetabERN (rare inherited metabolic disease) finds education one of its most important goals. This includes both the education and specialized training of professionals involved in metabolic patient care, and patient education.
Webinars are broadcasted and available online. Previous webinars...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, e-learning

Educational webinars on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET)

ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases. These include hereditary conditions, and systemic autoimmune diseases such as systemic sclerosis, mixed connective tissue diseases, inflammatory idiopathic myopathies,...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, Video, e-learning

Webinars and Pills of knowledge Videos on rare vascular diseases (VASCERN)

VASCERN propose short single video lessons (of approximately 3-5 minutes long) in which an expert talks about a specific topic that has been selected.
Topics developed are covering: Pediatric and Primary Lymphedema ; Medium-Sized Arteries (MSA); Heritable Thoracic Aortic Diseases (HTAD);...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: e-learning, Video

The Genomics Era: the Future of Genetics in Medicine

The course will give you an awareness of genomic technologies and the data they generate.
The course draws on the experience of experts in clinical genetics and education at St George’s, University of London, St George’s University Hospitals NHS Foundation Trust and the Genomics Education...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: e-learning

Whole Genome Sequencing: Decoding the Language of Life and Health

Whole genome sequencing is a relatively new technology that allows us to ‘read’ a person’s or organism’s entire genetic code. But how does it work and what does it mean for all of us? How do scientists and clinicians begin to make sense of the vast amount of information that whole genome...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: e-learning

Genomic Technologies in Clinical Diagnostics: Next Generation Sequencing

This course focuses on genomic sequencing.
Topics covered:
- The changing landscape of genomics: From Sanger sequencing to Next Generation Sequencing
- Overview of Next Generation Sequencing platforms and their methodology
- Targeted resequencing
- Alignment, variant calling and...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: e-learning

Genomic Technologies in Clinical Diagnostics: Molecular Techniques

This course focuses on molecular techniques. By the end, you will be able to demonstrate knowledge and applicability of the molecular principles behind:
- array comparative genomic hybridisation (array CGH);
- karyotyping;
- fluorescent in situ hybridisation (FISH);
- Southern blotting;
-...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: e-learning

Genetics education for primary care resources from the Gen-Equip project

GEN-EQUIP project combine education, primary care and genetics. Each module is based on a case and covers a different type of genetic condition you might see in primary care. Through its website, it offers genetics education free of charge to those who want continuing medical or professional...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Documentation, Video, Training materials, online modules, e-learning

EATRIS Transmed Academy - course on translational medicine

Online course on the landscape of translational medicine
An online course for the next generation of translational scientists (PhDs, Postdocs and MDs) is touching upon key aspects of translational research and medicines development. You will learn more about target validation, predictive models,...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: e-learning, Webinar

Rheumatic and musculoskeletal diseases online resources from EULAR (European League Against Rheumatism)

EULAR (European League Against Rheumatism) has made substantial efforts and investment in developing e-learning opportunities with the newest developments in the field of rheumatology.
All EULAR courses are highly subsidized and managed by a scientific course committee responsible for the...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: online modules, e-learning

Granulomatosis with polyangiitis screencast

Granulomatosis with polyangiitis (GPA - formerly known as Wegener’s granulomatosis) is a rare vasculitis which commonly presents with symptoms related to the respiratory tract. This ‘Five minutes to change your practice’ screencast discusses the presentation of GPA, when to consider it as a...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Video, e-learning

Medics4RareDiseases (M4RD) video library

Medics4RareDiseases (M4RD) provides e-learning for medical students and doctors about the fundamentals of rare diseases : Communication Skills, Covid19, Diagnosis, General Practice, Endocrinology, Events, Genomics, M4RD, Reseaarch, The unusual suspects, Rare Diseases, Training.
Their ultimate...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: e-learning

Integrated DEsign and AnaLysis of clinical trials in small population group (IDeAl) resources

IDeAl Webinar Series, included introduction by Ralf-Dieter Hilgers, randomisation, clinical trials, extrapoling doseresponse inforation, biomarker surrogate endpoints, design studies, design of pharmacogenetic, genetic factors influencing the response to the therapy, decision analysis... in small...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: e-learning, Webinar

Webinars on rare neurological diseases (ERN-RND)

ERN-RND (European Reference Network for Rare Neurological Diseases (ERN- RND)) provides educational webinars on rare neurological and neuromuscular diseases - in collaboration with the European Reference Network for Rare Neuromuscular Diseases (EURO-NMD) and the European Academy of Neurology...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, e-learning

Webinars on rare neuromuscular diseases (EURO-NMD)

EURO-NMD provides educational webinars on a monthly basis to increase the knowledge around different specialist areas related to the neuromuscular field. Each webinar lasts approximately one hour with the opportunity for viewers to ask questions on the subject area. The recordings and slides will...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, e-learning

RD-Connect Webinars

As part of a close working relationship between EURO-NMD (European Reference Network for the thematic grouping of rare neuromuscular diseases (NMDs)) and RD-Connect three informative webinars were organised for those researchers involved in ERNs :
1. Genomic analysis quick and easy: RD-Connect...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, e-learning

Transplantchild Webinars (ERN TransplantChild)

ERN TransplantChild is a European Reference Network (ERN) for Paediatric Transplantation.
These e-learning webinars focuses on various pediatric transplantation items.

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, e-learning

European training programme in pharmacovigilance and pharmacoepidemiology (EU2P)

Online training in pharmacovigilance and pharmacoepidemiology. Eu2P offers several types of courses to meet specific training needs : short course, certificate course, and master programme. Eu2P stands for "European programme in Pharmacovigilance and Pharmacoepidemiology".

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: e-learning