1. An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network - SpainRDR https://spainrdr.isciii.es Institute of Rare Diseases Research (IIER) Instituto de Salud Carlos III File: IR11/RDR-16 Years: Dec, 2011-Dec, 2013 (2012-2014) 1

2. WP2- T8.TRAINING Partner 16- Galicia Carmen Navarro (PI) Cristina Vázquez SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC 2

3. PURPOSE OF TRAINING Homogenize the knowledge among the members of the team, especially: - Coding systems - Standard Operating Procedures (SOPs) Addressed to all Spain-RDR Groups During all the length of the project, according to the detected needs 3

4. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC SOME DIFFICULTIES… Different needs depending on the region: Members of the teams and hired personnel with different specialities and abilities Lack of time: Other priority tasks to be developed first Budget limitations: Funds can not cover an in-person training 4

5. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC PROPOSAL OF TRAINING METHODOLOGY Video recording of lectures regarding topics of interest Dissemination through the private area of Spain-RDR web page. Possible use of facilities and material of the ISCIII (Madrid) and Galician Central Health Services (Santiago de Compostela) 5

6. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC PROPOSAL OF TRAINING 6

7. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC GIVEN BY… Specialists on different topics (belonging or not to Spain-RDR project) ADDRESSED TO… All Spain-RDR members, mainly the personnel hired for the project WHEN During the length of the project, when needed PROPOSAL OF TRAINING 7

8. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC Establishing a list of topics Volunteers to prepare and record the lectures TRAINING NEEDS Funds for the travel expenses of speakers A survey would be conducted 8

9. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC TIME PLAN March 9

10. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC TIME PLAN April 10

11. Thank you very much! SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC 11