RARE-Bestpractices papers, reports, presentations,

workshops and public deliverables

RARE-Bestpractices in peer-reviewed journals and reports

Hilton Boon M, Harbour J. Thompson L, AGREE II workshop participants for the RARE-Bestpractices Consortium. Report of an international workshop to explore the utility of the AGREE II instrument for appraisal of rare disease guidelines. Rare Dis Orphan Drugs 2015, 2 (1): 11-15 

Morciano C, Laricchiuta P, Taruscio D, Schünemann H. European Reference Networks and Guideline Development and Use: Challenges and Opportunities. Public Health Genomics. 2015;18(5):318-20

C. Morciano, P. Laricchiuta, D. Taruscio. RARE-Bestpractices: A platform for sharing best practices for the management of rare diseases  in: Taruscio D. Centro Nazionale Malattie Rare: dalla ricerca alle azioni nazionali e alle collaborazioni internazionali. Roma: Istituto Superiore di Sanità; 2015 (Rapporti ISTISAN 15/18)

Pai M, Iorio A, Meerpohl J, Taruscio D, Laricchiuta P, Mincarone P, Morciano C, Leo C G, Sabina S, Akl E, Treweek S, Djulbegovic B, Schunemann H & Consortium for the RARE-Bestpractices (2015) Developing methodology for the creation of clinical practice guidelines for rare diseases: A report from RARE-Bestpractices. Rare Diseases 3:1, e1058463 

Taruscio D, Morciano C, Laricchiuta P and the RARE-Bestpractices consortium. RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases.Rare Dis Orphan Drugs 2014 1(1):5-8

Sejersen T, Del Giovane C, Filippini G, Leo CG, Meerpohl JJ, Mincarone P, Minozzi S, Saverio S, Schünemann H, Senecat J, Taruscio D, and the  RARE-Bestpractices Consortium. Methodology for production of best practice guidelines for rare diseases. Rare Dis Orphan Drugs  2014; 1(1):10-19 

Hilton Boon M, Ritchie K, Manson J for the RARE-Bestpractices Consortium. Improving the retrieval and dissemination of rare disease guidelines and research recommendations: a RARE-bestpractices initiative.  Rare Dis Orphan Drugs 2014; 1(1):20-29

Tordrup D, Tzouma V, Kanavos P. Orphan drug considerations in Health Technology Assessment in eight European countries.  Rare Dis Orphan Drugs 2014; 1(3):83-97-

2015

Mincarone P, Leo CG, Sabina S, Tordrup D, Taruscio D, Kanavos P Reimbursed price of orphan drugs: a value based framework  7-11 November 2015    ISPOR 18th Annual European Congress, Milan (Italy) (Oral  Presentation) 

Harbour J.RARE-Bestpractices: engaging stakeholders in improving access to rare disease guidelines  7-10 October 2015   Guidelines International Network, Amsterdam (Netherlands) (Poster)  

Ritchie K, Harbour J, Lorna T Supporting best quality care for patients with rare diseases. 6-8 June 2015   European Society of Human Genetics,  Glasgow (UK) (Poster)    

Ritchie K. RARE-Best-practices Guideline collection development and appraisal.  19 September 2015 European Academy of Paediatrics, Oslo (Norway) (Oral presentation)  

Taruscio  D.  Rare Best-Practices  project. 12-13 March 2015   Commission Expert Group on Rare Diseases  4th meeting, Luxembourg  (Oral Presentation)

Taruscio D.  RARE-Bestpractices initiative.  5-6  February 2015   E-Rare3 Kick off meeting, Paris   (Oral presentation)     

2014

Domenica Taruscio. “Overview of RARE-Bestpractices EU Project” Oral presentation: 7th ECRD – The European Conference on Rare Diseases and Orphan Products, Berlin, Germany, 8 - 10 May 2014

Cristina Morciano. “Patients as guideline developers: a RARE-Bestpractices consultation session” Oral presentation: EURORDIS Membership meeting 2014, Berlin, Germany, 8 - 10 May 2014

Paola Laricchiuta. “Patients as guideline users: a RARE-Bestpractices consultation session” Oral presentation: EURORDIS Membership meeting 2014, Berlin, Germany, 8 - 10 May 2014

Juliette Senecat. “The importance of European Best Practice Guidelines: RARE-Bestpractices Project and the involvement of EURORDIS” Oral presentation: EURORDIS Membership meeting 2014, Berlin, Germany, 8 - 10 May 2014

Karen Ritchie, Michele Hilton Boon, Jan Manson. “Update on RARE-Bestpractices: Guidelines and research recommendations” Oral presentation: EAP Spring meeting  Rzeszow, Poland, 30 - 31 May 2014

Jan Manson, Michele Hilton Boon, Karen Ritchie. “Hunting zebra: retrieval of rare disease clinical guidelines” Oral presentation/abstract: 14th EAHIL Conference: "Divided we fall, united we inform. Building alliances for a new European cooperation”, Rome, Italy, 11 - 13 June 2014

Michele Hilton Boon, Jan Manson. “Rare diseases, familiar themes: the role of the information professional in an international collaboration” Oral presentation/abstract: HLG Conference 2014, Oxford, United Kingdom, 24 - 25 July 2014

Karen Ritchie, Jan Manson, Michele Hilton Boon. “RARE-Bestpractices – Addressing inequalities in rare disease management” Poster abstract: 7th European Public Health Conference, Glasgow, Scotland, 19 - 22 November 2014

2013

Juliette Senecat. “The importance of European best practice guidelines: RARE-Bestpractices project  and involvement of EURORDIS” Oral presentation: Eurordis Membership Meeting 2013, Dubrovnik, Croatia, 30 May - 1 June 2013

Juliette Senecat. “RARE-Bestpractices project. A platform for sharing best practices for the management of rare diseases – Presentation and Update” Oral presentation: 6th Workshop of the EURORDIS Council of European Federations, Paris, France, 29 - 30 October 2013

Domenica Taruscio. “An Overview of the RARE-Bestpractices project” Oral presentation/abstract: 8th ICORD meeting, St Petersburg, Russia, 1 - 2 November 

RARE-Bestpractices  in CORDIS News

RARE-Bestpractices: ricerca sulle malattie rare (IT)

RARE-Bestpractices: researching rare diseases (EN)

RARE-Bestpractices: recherche sur les maladies rares (FR)

RARE-Bestpractices: erforschung seltener Krankheiten (DE)

RARE-Bestpractices: investigación sobre enfermedades raras (ES)

RARE-Bestpractices: badania nad chorobami rzadkimi (PL)