Preliminary agenda RARE-Bestpractices Conference

Preliminary agenda RARE-Bestpractices Conference
24 November 2016 (Istituto Superiore di Sanità, Aula Pocchiari viale Regina Elena 299, Rome,Italy)
The RARE-Bestpractices Conference will take place in Rome on the 24th of November 2016 at Istituto Superiore di Sanità, Rome, Italy.
The aim of the Conference is to disseminate the results of the RARE-Bestpractices project (www.rarebestpractices.eu) and offer a forum
for discussion among all stakeholders on how to take advantage from this work in delivering better health decisions and health policies
for rare diseases.
The event will bring together leading experts in the area of evidence synthesis documents who will discuss the methodological
advancements and knowledge resources developed by RARE-Bestpractices consortium and focus on mechanisms for ensuring the
production of reliable, relevant, usable evidence in a bid to increase the value of research on rare disease.
The RARE-Bestpractices Consortium has created a platform which is not just organized around a specific area of diseases but rather acts
as a flexible hub capable to connect other existing initiatives devoted to ensure an effective development and use of the knowledge on
rare diseases.
The Conference will also be dedicated to discuss ways to strengthen the partnerships that RARE-Bestpractices has already set up and to
study the options for starting further international collaborations, combine the efforts in sharing resources and make an efficient use of
the available information. The scientific committee has already confirmed several presentations and is still at work to enrich the
programme with contributions from other partners.
The Conference is open to health professionals, policy makers, researchers, research funders and citizens involved and interested in rare
diseases health care, guideline development and in improving the value of research.
Conference chairs Domenica Taruscio, Cristina Morciano Istituto Superiore di Sanità, Italy
Scientific committee
Mathieu Boudes - EURORDIS, France
Roberto D’Amico - Cochrane Italy - University of Modena and Reggio Emilia, IT
Graziella Filippini - Associazione per la Ricerca sull'Efficacia dell'Assistenza Sanitaria Centro Cochrane Italiano, Italy
Panos Kanavos - London School of Economics and Political Science, United Kingdom
Cristina Morciano - Istituto Superiore di Sanità, Italy
Karen Ritchie - Healthcare Improvement Scotland, United Kingdom
Juliette Senecat - EURORDIS, France
Domenica Taruscio - Istituto Superiore di Sanità, Italy
Holger Schünemann - McMaster University, Canada
Registration
th
For online registration at the Conference website no later than 17 November 2016
http://www.rarebestpractices.eu/pagine-30-rare_bestpractices_conference,
or at https://it.surveymonkey.com/r/RBPconference
or at http://www.iss.it/binary/cnmr4/cong/RBP_Conference_application_ENG_ITA.pdf
To date, the following speakers are confirmed:
9:00-9:20 Introduction
Walter Ricciardi, President Istituto Superiore di Sanità (IT)
Jaroslaw Waligora, Policy officer for rare diseases
Domenica Taruscio, Istituto Superiore di Sanità (IT)
Cristina Morciano, Istituto Superiore di Sanità (IT)
10:00-11:15 Session 1 Improving trustworthiness of health care guideline development on rare disease
Joerg Meerpohl, University of Freiburg (chair) (DE)
Andrea Darzi, American University of Beirut (LB)
Alfonso Iorio, McMaster University (CA)
Lisa Thom, Catastrophic Antiphospholipid Syndrome patient representative
11:30-12:45 Session 2 HTA, clinical guidelines and orphan drugs
Panos Kanavos, London School of Economics and Political Science (UK)
Francis Arickx, National Institute for Health and Disability Insurance (B)
Victoria Tzouma, London School of Economics and Political Science (UK)
Guillaume Dedet, World Health Organisation
Elena Nicod, Università Bocconi (IT)
13:30- 14:45 Session 3 Knowledge resources for health care guideline developers and users
Cristina Morciano, Istituto Superiore di Sanità
Michele Hilton Boon, University of Glasgow (UK)
Ina Kopp, German Association of the Scientific Medical Societies (DE)
Karen Ritchie, Healthcare Improvement Scotland (UK)
Graziella Filippini, Associazione per la Ricerca sull'Efficacia dell'Assistenza Sanitaria Centro Cochrane Italiano (IT)
Avril Kennan, DEBRA International (AT)
Simone Baldovino, Università di Torino (IT)
14:45-16:00 Session 4 Shaping the future research agenda on rare diseases: ensuring the production of reliable, relevant, usable
evidence
Roberto D’Amico, Associazione per la Ricerca sull'Efficacia dell'Assistenza Sanitaria Centro Cochrane Italiano (IT)
Philippe Ravaud, Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité (FR)
Katherine Cowan, James Lind Alliance (UK)
Sonja van Weely, The Netherlands Organisation for Health Research and Development (NL)
Mathieu Boudes, EURORDIS (FR)
16:00-16:45 Session 5 Foster International Collaborations
Domenica Taruscio,Istituto Superiore di Sanità (IT)
Ana Rath Institut national de la santé et de la recherche médicale (FR)
Sonja van Weely, The Netherlands Organisation for Health Research and Development (NL)
Marta Mosca, Sara Talarico, Università di Pisa (IT)
17:00- 17:15 Closing remarks
Egle Simelyte, European Commission, Domenica Taruscio, Istituto Superiore di Sanità (IT)
The RARE-Bestpractices project is funded by the European Union Seventh Framework Programme (FP7/2007-2013) under grant agreement n° 30569