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

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

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

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

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
-...

Writing a Data Management Plan

A good data management plan is crucial for any scientist and researcher. In this course, you will learn how to write one. You will find out how you can prepare, handle and share your research data.

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,...

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'...

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...

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);...

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...

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...

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...

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...

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...

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

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".

eLearning course about the importance of good research data management (RDM).
The Danish National Forum for Data Management and the Danish Universities have developed the eLearning course “Research Data Management”. The course is divided into 3 independent modules : Introduction; FAIR...

In response to rare-disease patients’ desire to make research more meaningful to their community, PCORI created an online Program for Rare Disease Patient Advocates.

The portal is aimed at rare disease advocates, patient groups and charities, though anyone with an interest in rare diseases or advocacy is welcome to sign-up. It is completely free to use, and users are encouraged to contact Findacure with suggestions for new content.
The portal shares ‘how to’...

There is a pressing need to integrate a broad range of innovative methodologies improving clinical trials in the setting of small sample population groups (SPG). The objective of IDeAl is to produce methods of general applicability irrespective of indication by Integrated DEsign and AnaLysis of...

Writing a Data Management Plan can be new to you. ‘Learn to write your Data Management Plan’, an online self-study course, can help you decide how to take good care of your valuable research data.

During the course you are writing your DMP step by step. As a result you have written a DMP for...