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Phenylketonuria (PKU) is an active field of investigation, and new diagnostic and treatment options are emerging that may reduce the burden of a life-long and limiting dietary management for these patients, their families and the society.
Basic and clinical research is today focusing on brain metabolism in PKU patients and its repercussion on neurological functions, on a better clinical characterization by biochemical and genetic analysis, and also on developing new therapeutic strategies or implementing the use of those already available, such as diet and sapropterin dihydrochloride,
Furthermore, evidence-based international guidelines are being developed to provide standardization in PKU management, including appropriate biomolecular diagnosis, treatment’s choice, evaluation of response to therapy, and achievement of targeted blood phenylalanine levels, also considering the social and economical impact of this disease.
The European Phenylketonuria Group (EPG) together with Serono Symposia International Foundation (SSIF) consider essential to continue their series of successful meetings on PKU, and are organizing the 2013 annual symposium dedicated to that. Aims of this meeting are to review the most important achievements of research in the field of PKU and to provide participants with solutions for optimizing patient management in their daily clinical practice.
At the end of the workshop, the participants will have received updated knowledge on the dietary management of PKU and will be able to:
Serono Symposia International Foundation (www.seronosymposia.org) is accredited by the European Accreditation Council for Continuing Medical Education (EACCME®) to provide the following CME activity for medical specialists. The EACCME® is an institution of the European Union of Medical Specialists (UEMS), www.uems.net
The conference “3rd Dietitians workshop on PKU” (14 March 2013 - Istanbul, Turkey) is designated for a maximum of 6 (six) hours of European CME credits (ECMEC). Each medical specialist should claim only those credits that he/she actually spent in the educational activity. EACCME® credits are recognized by the American Medical Association (AMA) towards the Physician's Recognition Award (PRA). To convert EACCME® credit to AMA PRA category 1 credit, please contact the AMA.
Session I Challenges of nutritional management in PKU
Chairs: Amaya Bélanger-Quintana (Spain) and Anna Maria Lammardo (Italy)
09.00 Obesity in PKU: Definition, assessment and aetiology
Júlio César Rocha (Portugal) View the presentation
09.30 Incidence of obesity across Europe: a presentation by ENEP
Hulya Gokmen Ozel (Turkey)
10.00 Bone status in PKU: the story so far
Martijn J. de Groot (The Netherlands)
Session II New perspectives in the dietary management of PK
Chairs: Anita MacDonald (UK) and Hulya Gokmen Ozel (Turkey)
11.00 Development of taste and taste preference in PKU: what do we know?
Kees De Graaf (The Netherlands) View video lecture
11.30 Challenges of nutritional support to adults with PKU
Sarah Boocock (UK) View video lecture
12.00 Original contributions and case studies
OP1: Satisfaction survey on a new tool for therapeutic education of parents with PKU children: “le Phétout”
Annie Spiewak (France)
OP2: Preliminary results. Multicenter study on growth in PKU patients
Amaya Bélanger-Quintana (Spain)
OP3: Adherence cases and challenges in adult PKU patients
Margreet van Rijn (The Netherlands)
Session III Dietary management: treatment and guidelines for all
Development of dietetic guidelines: do we have agreement?
Chair: Francjan J. van Spronsen (The Netherlands)
14.30 Questions and statements from adherence group
Annet M. Bosch (The Netherlands)
14.45 Questions and statements from nutrition group
Kirsten Ahring (Denmark)
15.00 What do the patients and families think?
Eric Lange (UK)
Challenges and issues in dietary management in different countries: sharing experiences
Chair: Anita MacDonald (UK)
16.00 Perspectives from The Netherlands
Margreet van Rijn (The Netherlands)
16.15 Perspectives from Turkey
Mubeccel Demirkol (Turkey)
16.30 Perspectives from Brazil
Ida V.D. Schwartz (Brazil)
16.45 Perspectives from Poland
Maria Gizewska (Poland)
Anita MacDonald
The Children’s Hospital
Birmingham,
West Midlands, UK
Kirsten Ahring
Center for PKU
Kennedy Institute
Glostrup, Denmark
Amaya Bélanger-Quintana
Unidad Enfermendades
Metabolices Servicio de Pediatria
Hospital Ramon y Cajal
Madrid, Spain
Katharina Dokoupil
Department of Metabolism and Nutrition
Dr. von Hauner Children's Hospital
University of Munich
Munich, Germany
Hulya Gokmen-Ozel
Department of Nutrition and Dietetics
Hacettepe University
Ankara, Turkey
Anna Maria Lammardo
Department of Pediatrics
San Paolo Hospital
University of Milan
Milan, Italy
Martine Robert
Hôpital Universitaire des Enfants
Reine-Fabiola
Brussels, Belgium
Júlio César Rocha
Centro de Genética Médica
Jacinto de Magalhães
Instituto Nacional de Saúde
Porto, Portugal
Margreet van Rijn
Section of Metabolic Diseases
Beatrix Children's Hospital
University Medical Center Groningen
Groningen, The Netherlands
Serono Symposia International Foundation adheres to guidelines of the European Accreditation Council for Continuing Medical Education (EACCME) and all other professional organizations, as applicable, which state that programs awarding continuing education credits must be balanced, independent, objective, and scientifically rigorous. Investigative and other uses for pharmaceutical agents, medical devices, and other products (other than those uses indicated in approved product labeling/package insert for the product) may be presented in the program (which may reflect clinical experience, the professional literature or other clinical sources known to the presenter). We ask all presenters to provide participants with information about relationships with pharmaceutical or medical equipment companies that may have relevance to their lectures. This policy is not intended to exclude faculty who have relationships with such companies; it is only intended to inform participants of any potential conflicts so that participants may form their own judgements, based on full disclosure of the facts. Further, all opinions and recommendations presented during the program and all program-related materials neither imply an endorsement nor a recommendation on the part of Serono Symposia International Foundation. All presentations represent solely the independent views of the presenters/authors.
The following faculty provided information regarding significant commercial relationships and/or discussions of investigational or non-EMEA/FDA approved (off-label) uses of drugs:
Kirsten Ahring Declared no potential conflict of interest.
Amaya Bélanger-Quintana Declared to be member of: Merck Serono PKU European Scientific Advisory Board, European nutrionist expert panel and Kamper advisory board.
Sarah Boocock Declared no potential conflict of interest.
Annet M. Bosch Declared receipt grant by Danone. Declared to be member of a company advisor board of Merck Serono and Danone.
Kees De Graaf Declared no potential conflict of interest.
Martijn J. de Groot Declared no potential conflict of interest.
Mübeccel Demirkol Declared no potential conflict of interest.
Maria Giżewska Declared no potential conflict of interest.
Hulya Gokmen-Ozel Declared receipt of honoraria or consultation fees by Merck Serono. Declared to be member of European Nutritional Expert Panel in PKU.
Anna Maria Lammardo Declared no potential conflict of interest.
Eric Lange Declared to be President of the ES. PKU and secretary of the NS.PKU. Declared no potential conflict of interest
Anita MacDonald Declared receipt of grants and contract by Nutricia, Vitaflo, Merck Serono. Declared receipt of honoraria or consultation fees from Nutricia, Merck Serono. Declared to be member of a company advisory board, board of directors or other similar group of ENEP, SAB, Merck Serono. Júlio César Rocha Declared to be member of a company advisory board, board of directors or other similar group of ENEP, Merck Serono.
Ida V.D. Schwartz Declared no potential conflict of interest.
Annie Spiewak Declared no potential conflict of interest.
Margreet van Rijn Declared receipt of grants and contracts from Danone and Nutricia Netherlands. Declared receipt of honoraria or consultation fees from Danone research.
Francjan J. van Spronsen Declared receipt of grants and contracts from Merck Serono, of honoraria or consultation fees from Merck Serono and Nutricia, to be member of Merck Serono and Nutricia advisory boards and participation in Merck Serono speaker’s bureau.
