RESPECT patient needs

The RESPECT consortium consisted of experts from the fields of clinical research, patient representation, and European paediatric research ethics and regulation. The following experts were partners in the RESPECT project:

• John Chaplin PhD, ( ) - University of Gothenburg, Paediatric Growth Centre
• The GPGRC is the coordinator of the RESPECT project and has expertise in the fields of Patient Reported Outcome Methods (PROMs), psychoendocrinology and paediatric clinical trials.

• Francis Crawley ( ) - Good Clinical Practice Alliance (Europe)
• Good Clinical Practice Alliance (Europe) is a consultancy group active in the area of ethics as related to CTs and medical research throughout Europe.

• Liuska Sanna, ( ) - European Patients Forum
• The EPF is a European umbrella NGO representing 44 chronic disease-specific patient organisations. The EPF works at the European level and with national coalitions of patients' organisations. EPF was the leading coordinator of the Value+ project promoting patients involvement in EU supported health-realted projects.

• Prof Dr Adriana Ceci, Consorzio valutazione Biologiche e Farmacologiche (Pavia)
• Consorzio per le Valutazioni Biologiche e Farmacologiche is a clinical research organisation (CRO) conducting and monitoring CTs, particularly with Thalassaemia patients, and coordinator of the TEDDY European Network of Excellence.

• Prof Dr David Neubauer, University Children's Hospital Ljubljana and the Foundation of Child Neurology
• The UCHL has expertise in the field of conducting paediatric clinical trials, particularly children with epilepsy and mitochondrial disease.

• Prof Dr Carlo Giaquinto, Azienda Ospedaliera di Padova
• Azienda Ospedaliera di Padova - Dept of Pediatrics, University of Padua has expertise in the area of paediatric CTs with a focus on HIV. They are leading the EU project GRIP and led the steering committee of the PENTA paediatric CTs network.

• Prof. Dr Monika Bullinger,University Hospital of Hamburg-Eppendorf, Department of Medical Psychology
• University Medical Centre Hamburg-Eppendorf has expertise in the areas of patient reported outcome methods (PROMS) and the development of quality of life instruments for child self report (eg. (DISABKIDS). The Medical Psychology Dept. trains medical staff who will in the future conduct CTs with children.