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PREFER SIGNED

Patient Preferences in benefit risk assessments during the drug life cycle - Sofia ref.: 115966

Total Cost €

EC-Contrib. €

Partnership

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Outcomes and
results

PREFER project word cloud

Explore the words cloud of the PREFER project. It provides you a very rough idea of what is the project "PREFER" about.

medical medicinal recommendations decisions stages preference suitable simulation cycle academia deviations academic newer smarter overview life withdrawal entire representation agencies guide patients members discussed changed cohorts array sme decision market hta broad sensitivity elicitation routinely prefer add reimbursement manner patient points regulatory practices drug bodies industry clinical consist randomized evaluation combinations prospectively tested drugs 16 exploring ones stakeholders outcomes contributions

Project "PREFER" data sheet

The following table provides information about the project.

Coordinator	UPPSALA UNIVERSITET Organization address address: VON KRAEMERS ALLE 4 city: UPPSALA postcode: 751 05 website: www.uu.se contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.
Coordinator Country	Sweden [SE]
Project website	http://www.imi-prefer.eu
Total cost	12˙000˙001 €
EC max contribution	6˙000˙000 € (50%)
Programme	1. H2020-EU.3.1.7. (Innovative Medicines Initiative 2 (IMI2))
Code Call	H2020-JTI-IMI2-2015-05-two-stage
Funding Scheme	IMI2-RIA
Starting year	2016
Duration (year-month-day)	from 2016-10-01 to 2021-09-30

Partnership

Take a look of project's partnership.

#	participants	country	role	EC contrib. [€]
1	UPPSALA UNIVERSITET UPPSALA UNIVERSITET Organization address address: VON KRAEMERS ALLE 4 city: UPPSALA postcode: 751 05 website: www.uu.se contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	SE (UPPSALA)	coordinator	1˙566˙849.00
2	KATHOLIEKE UNIVERSITEIT LEUVEN KATHOLIEKE UNIVERSITEIT LEUVEN Organization address address: OUDE MARKT 13 city: LEUVEN postcode: 3000 website: www.kuleuven.be contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	BE (LEUVEN)	participant	683˙750.00
3	UNIVERSITAIR MEDISCH CENTRUM UTRECHT UNIVERSITAIR MEDISCH CENTRUM UTRECHT Organization address address: HEIDELBERGLAAN 100 city: UTRECHT postcode: 3584 CX website: www.umcutrecht.nl contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	NL (UTRECHT)	participant	618˙672.00
4	ERASMUS UNIVERSITEIT ROTTERDAM ERASMUS UNIVERSITEIT ROTTERDAM Organization address address: BURGEMEESTER OUDLAAN 50 city: ROTTERDAM postcode: 3062 PA website: www.eur.nl contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	NL (ROTTERDAM)	participant	551˙125.00
5	ISTITUTO EUROPEO DI ONCOLOGIA SRL ISTITUTO EUROPEO DI ONCOLOGIA SRL Organization address address: Via Filodrammatici 10 city: MILANO postcode: 20121 website: www.ieo.it contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IT (MILANO)	participant	335˙000.00
6	UNIVERSITY OF NEWCASTLE UPON TYNE UNIVERSITY OF NEWCASTLE UPON TYNE Organization address address: KINGS GATE city: NEWCASTLE UPON TYNE postcode: NE1 7RU website: http://www.ncl.ac.uk/ contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (NEWCASTLE UPON TYNE)	participant	264˙922.00
7	STEINBEISSER PROJECT MANAGEMENT UG (HAFTUNGSBESCHRANKT) STEINBEISSER PROJECT MANAGEMENT UG (HAFTUNGSBESCHRANKT) Organization address address: PRINZREGENTENSTRASSE 100 city: MUNCHEN postcode: 81677 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (MUNCHEN)	participant	262˙500.00
8	MINDBYTES MINDBYTES Organization address address: SCHOONDREEF 7 city: MERKSPLAS postcode: 2330 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	BE (MERKSPLAS)	participant	259˙937.00
9	FEDERAAL KENNISCENTRUM VOOR DE GEZONDHEIDSZORG FEDERAAL KENNISCENTRUM VOOR DE GEZONDHEIDSZORG Organization address address: BOULEVARD DU JARDIN BOTANIQUE 55 city: BRUXELLES postcode: 1000 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	BE (BRUXELLES)	participant	252˙500.00
10	THE UNIVERSITY OF BIRMINGHAM THE UNIVERSITY OF BIRMINGHAM Organization address address: Edgbaston city: BIRMINGHAM postcode: B15 2TT website: www.bham.ac.uk contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (BIRMINGHAM)	participant	238˙750.00
11	UNIVERSITATSKLINIKUM ERLANGEN UNIVERSITATSKLINIKUM ERLANGEN Organization address address: MAXIMILIANSPLATZ 2 city: ERLANGEN postcode: 91054 website: www.uk-erlangen.de contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (ERLANGEN)	participant	233˙722.00
12	"INSTITUTO TUMORI ""GIOVANNI PAOLO II""" "INSTITUTO TUMORI ""GIOVANNI PAOLO II""" Organization address address: VIA ORAZIO FLACCO 65 city: BARI postcode: 70126 website: www.oncologico.bari.it contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IT (BARI)	participant	233˙275.00
13	EUROPEAN CANCER PATIENT COALITION EUROPEAN CANCER PATIENT COALITION Organization address address: RUE MONTOYER 40 city: BRUXELLES postcode: 1000 website: www.ecpc-online.org contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	BE (BRUXELLES)	participant	223˙250.00
14	MUSCULAR DYSTROPHY GROUP OF GREAT BRITAIN AND NORTHERN IRELAND MUSCULAR DYSTROPHY GROUP OF GREAT BRITAIN AND NORTHERN IRELAND Organization address address: 61A GREAT SUFFOLK STREET city: LONDON postcode: SE1 0BU website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (LONDON)	participant	80˙000.00
15	ERASMUS UNIVERSITAIR MEDISCH CENTRUM ROTTERDAM ERASMUS UNIVERSITAIR MEDISCH CENTRUM ROTTERDAM Organization address address: DR MOLEWATERPLEIN 40 city: ROTTERDAM postcode: 3015 GD website: www.erasmusmc.nl contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	NL (ROTTERDAM)	participant	67˙575.00
16	FORUM EUROPEEN DES PATIENTS (FPE) FORUM EUROPEEN DES PATIENTS (FPE) Organization address address: RUE DICKS 14 city: LUXEMBOURG postcode: 1417 website: http://www.eu-patient.eu/ contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	LU (LUXEMBOURG)	participant	65˙000.00
17	INTERNATIONAL ALLIANCE OF PATIENT'ORGANIZATIONS INTERNATIONAL ALLIANCE OF PATIENT'ORGANIZATIONS Organization address address: 49-51 EAST ROAD city: LONDON postcode: N1 6AH website: www.iapo.org.uk contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (LONDON)	participant	63˙173.00
18	AbbVie Ltd AbbVie Ltd Organization address address: Vanwall Road city: Maidenhead postcode: SL6 4XE website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (Maidenhead)	participant	0.00
19	ACTELION PHARMACEUTICALS LTD ACTELION PHARMACEUTICALS LTD Organization address address: GEWERBESTRASSE 16 city: ALLSCHWIL postcode: 4123 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	CH (ALLSCHWIL)	participant	0.00
20	AMGEN LIMITED AMGEN LIMITED Organization address address: Cambridge Science Park - Milton Road 240 city: CAMBRIDGE postcode: CB4 0WD website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (CAMBRIDGE)	participant	0.00
21	ASTELLAS PHARMA EUROPE BV ASTELLAS PHARMA EUROPE BV Organization address address: SYLVIUSWEG 84 city: LEIDEN postcode: 2333 BE website: www.astellas.com contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	NL (LEIDEN)	participant	0.00
22	ASTRAZENECA AB ASTRAZENECA AB Organization address address: Vastra Maelarhamnen city: SODERTAELJE postcode: 151 85 website: www.astrazeneca.com contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	SE (SODERTAELJE)	participant	0.00
23	Bayer Pharma AG Bayer Pharma AG Organization address address: Muellerstrasse 178 city: Berlin postcode: 13353 website: www.bayerpharma.com contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (Berlin)	participant	0.00
24	CSL BEHRING GMBH CSL BEHRING GMBH Organization address address: EMIL VON BEHRING STRASSE 76 city: MARBURG postcode: 35041 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (MARBURG)	participant	0.00
25	Eli Lilly and Company Limited Eli Lilly and Company Limited Organization address address: Lilly House, Priestley Road city: Basingstoke postcode: RG24 9NL website: www.lilly.com contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (Basingstoke)	participant	0.00
26	F. HOFFMANN-LA ROCHE AG F. HOFFMANN-LA ROCHE AG Organization address address: GRENZACHERSTRASSE 124 city: BASEL postcode: 4070 website: www.roche.com contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	CH (BASEL)	participant	0.00
27	JANSSEN PHARMACEUTICA NV JANSSEN PHARMACEUTICA NV Organization address address: TURNHOUTSEWEG 30 city: BEERSE postcode: 2340 website: www.janssenpharmaceutica.be contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	BE (BEERSE)	participant	0.00
28	MERCK KOMMANDITGESELLSCHAFT AUF AKTIEN MERCK KOMMANDITGESELLSCHAFT AUF AKTIEN Organization address address: FRANKFURTER STRASSE 250 city: DARMSTADT postcode: 64293 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (DARMSTADT)	participant	0.00
29	MERCK SHARP & DOHME CORP MERCK SHARP & DOHME CORP Organization address address: ONE MERCK DRIVE city: WHITEHOUSE STATION NJ postcode: 8889 website: www.merck.com contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	US (WHITEHOUSE STATION NJ)	participant	0.00
30	NOVARTIS PHARMA AG NOVARTIS PHARMA AG Organization address address: LICHTSTRASSE 35 city: BASEL postcode: 4056 website: www.novartis.com contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	CH (BASEL)	participant	0.00
31	PFIZER LIMITED PFIZER LIMITED Organization address address: RAMSGATE ROAD city: SANDWICH postcode: CT13 9NJ website: www.pfizer.co.uk contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (SANDWICH)	participant	0.00
32	SANOFI-AVENTIS RECHERCHE & DEVELOPPEMENT SANOFI-AVENTIS RECHERCHE & DEVELOPPEMENT Organization address address: Pierre Brossolette 1 city: Chilly Mazarin postcode: 91380 website: www.sanofi-aventis.com contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	FR (Chilly Mazarin)	participant	0.00
33	TAKEDA DEVELOPMENT CENTRE EUROPE LTD TAKEDA DEVELOPMENT CENTRE EUROPE LTD Organization address address: ALDWYCH 61 city: LONDON postcode: WC2B 4AE website: www.takeda.com contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (LONDON)	participant	0.00

Map

Project objective

The PREFER project will deliver an overview and evaluation of preference elicitation methods to be applied in the entire drug life cycle, i.e. in the early stages of identifying medical needs, in clinical testing, to guide decisions on reimbursement and to make decisions on withdrawal of drugs from the market. A broad array of (combinations of) patient preference methods will be tested prospectively in a large number of case studies. The availability of large patient cohorts will enable to test new methods or deviations from existing methods in a randomized manner, by comparing well-known methods with newer ones. The use of simulation studies will both contribute to smarter design of case studies and to exploring the sensitivity of outcomes of preference studies. Based on discussions with a broad representation of stakeholders e.g. patients, patient organisations, regulatory authorities, HTA bodies and reimbursement agencies, suitable methods will be tested and their contributions to improved decision making will be discussed in recommendations adapted to the needs of all relevant stakeholders. The recommendations from PREFER are expected to lead to changed practices, in that industry will routinely assess whether a preference study would add value at key decision points in the medicinal product life cycle and, if so, implement patient-preference elicitation studies according to the PREFER project recommendations. The PREFER consortium consist of 16 industry partners and 16 academic and SME members including representation from academia, patient organizations, HTA bodies, reimbursement agencies, and project management.

Deliverables

List of deliverables.
Report characterising the types and possible role of psychological instruments and educational tools in measuring patient preferences	Documents, reports	2020-04-08 21:05:17
Report characterising the criteria to be used to assess the performance of patient-preference methods, the performance of the methods on these criteria, and a gap analysis	Documents, reports	2020-04-08 21:05:17
Final scope document for recommendations	Documents, reports	2020-04-08 21:05:18
Dissemination and communication plan	Documents, reports	2020-04-08 21:05:18
Report describing the candidate methodologies and assessment criteria to go forward for testing in empirical case studies and simulation studies	Documents, reports	2020-04-08 21:05:18
Initial data management plan	Documents, reports	2020-04-08 21:05:18
Report characterising the desires, expectations concerns, and requirements of stakeholders about methodologies for patient-preference elicitation	Documents, reports	2020-04-08 21:05:17
Open workshop on preference elicitation	Websites, patent fillings, videos etc.	2020-04-08 21:05:18
Report describing existing processes, conditions, and contextual factors that influence the utility and role of patientpreference studies and the rationale behind such influence	Documents, reports	2020-04-08 21:05:17
Report characterising the decision points throughout the medicinal product life cycle, the activities that are carried out in each step, and the types of assessments made at these points, as well as the assessment criteria used by different stakeholders	Documents, reports	2020-04-08 21:05:17
Website launch	Websites, patent fillings, videos etc.	2020-04-08 21:05:18
Report describing existing qualitative and quantitative methods for measuring patient benefit-risk preferences in medical treatment	Documents, reports	2020-04-08 21:05:17
Report describing the requirements for patient-preference elicitation case studies to inform benefit-risk decision making for industry, Regulatory Authorities, HTA bodies, and reimbursement agencies at different decision points	Documents, reports	2020-04-08 21:05:18
Defining Key Performance Indicators (KPIs)	Documents, reports	2020-04-08 21:05:18
Final report on operational requirements for the conduct of case studies	Documents, reports	2020-02-17 17:32:43

Take a look to the deliverables list in detail: detailed list of PREFER deliverables.

Publications

List of publications.
year	authors and title	journal	last update
2019	Rosanne Janssens, Selena Russo, Eline van Overbeeke, Chiara Whichello, Sarah Harding, JÃ¼rgen KÃ¼bler, Juhaeri Juhaeri, Karin SchÃ¶lin Bywall, Alina Comanescu, Axel Hueber, Matthias Englbrecht, Nikoletta Nikolenko, Gabriella Pravettoni, Steven Simoens, Hilde Stevens, Richard Hermann, Bennett Levitan, Irina Cleemput, Esther de Bekker-Grob, Jorien Veldwijk, Isabelle Huys Patient Preferences in the Medical Product Life Cycle: What do Stakeholders Think? Semi-Structured Qualitative Interviews in Europe and the USA published pages: 513-526, ISSN: 1178-1653, DOI: 10.1007/s40271-019-00367-w	The Patient - Patient-Centered Outcomes Research 12/5	2020-04-08
2019	Vikas Soekhai, Chiara Whichello, Bennett Levitan, Jorien Veldwijk, Cathy Anne Pinto, Bas Donkers, Isabelle Huys, Eline van Overbeeke, Juhaeri Juhaeri, Esther W. de Bekker-Grob Methods for exploring and eliciting patient preferences in the medical product lifecycle: a literature review published pages: 1324-1331, ISSN: 1359-6446, DOI: 10.1016/j.drudis.2019.05.001	Drug Discovery Today 24/7	2020-04-08
2019	Rosanne Janssens, Isabelle Huys, Eline van Overbeeke, Chiara Whichello, Sarah Harding, JÃ¼rgen KÃ¼bler, Juhaeri Juhaeri, Antonio Ciaglia, Steven Simoens, Hilde Stevens, Meredith Smith, Bennett Levitan, Irina Cleemput, Esther de Bekker-Grob, Jorien Veldwijk Opportunities and challenges for the inclusion of patient preferences in the medical product life cycle: a systematic review published pages: , ISSN: 1472-6947, DOI: 10.1186/s12911-019-0875-z	BMC Medical Informatics and Decision Making 19/1	2020-04-08
2019	Selena Russo, Chiara Jongerius, Flavia Faccio, Silvia F.M. Pizzoli, Cathy Anne Pinto, Jorien Veldwijk, Rosanne Janssens, Gwenda Simons, Marie Falahee, Esther de Bekker-Grob, Isabelle Huys, Douwe Postmus, Ulrik Kihlbom, Gabriella Pravettoni Understanding Patients\' Preferences: A Systematic Review of Psychological Instruments Used in Patients\' Preference and Decision Studies published pages: 491-501, ISSN: 1098-3015, DOI: 10.1016/j.jval.2018.12.007	Value in Health 22/4	2020-04-08
2019	Chiara Whichello, Eline van Overbeeke, Rosanne Janssens, Karin SchÃ¶lin Bywall, Selena Russo, Jorien Veldwijk, Irina Cleemput, Juhaeri Juhaeri, Bennett Levitan, JÃ¼rgen KÃ¼bler, Meredith Smith, Richard Hermann, Matthias Englbrecht, Axel J. Hueber, Alina Comanescu, Sarah Harding, Steven Simoens, Isabelle Huys, Esther W. de Bekker-Grob Factors and Situations Affecting the Value of Patient Preference Studies: Semi-Structured Interviews in Europe and the US published pages: , ISSN: 1663-9812, DOI: 10.3389/fphar.2019.01009	Frontiers in Pharmacology 10	2020-04-08
2017	Esther W. de Bekker-Grob, Conny Berlin, Bennett Levitan, Karim Raza, Kalliopi Christoforidi, Irina Cleemput, Jana Pelouchova, Harald Enzmann, Nigel Cook, Mats G. Hansson Giving Patientsâ€™ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Publicâ€“Private Project published pages: 263-266, ISSN: 1178-1653, DOI: 10.1007/s40271-017-0222-3	The Patient - Patient-Centered Outcomes Research 10/3	2020-04-08
2018	Eline van Overbeeke, Chiara Whichello, Rosanne Janssens, Jorien Veldwijk, Irina Cleemput, Steven Simoens, Juhaeri Juhaeri, Bennett Levitan, JÃ¼rgen KÃ¼bler, Esther de Bekker-Grob, Isabelle Huys Factors and situations influencing the value of patient preference studies along the medical product lifecycle: a literature review published pages: , ISSN: 1359-6446, DOI: 10.1016/j.drudis.2018.09.015	Drug Discovery Today	2020-04-08
2018	de Bekker-Grob, Esther W.; Juhaeri, Juhaeri; Kihlbom, Ulrik; Levitan, Bennett et al. Giving patients\' preferences a voice in the medical product lifecycle: w018y, when and how?: The public-private PREFER project: Work package 2 published pages: p. 19-21, ISSN: 2375-866X, DOI:	ISPOR Value & Outcomes Spotlight Vol. 4, no 3	2020-04-08

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