RESPECT patient needs
- Book title: RESPECT patient needs: Relating expectations and needs to the participation and empowerment of children in clinical trials
- Authors: John E. Chaplin and the RESPECT project partners: Francis P. Crawley, Liuska Sanna, Adriana Ceci, David Neubauer, Carlo Giaquinto, Catriona Chaplin and Monika Bullinger
- Publication date: 2012
- Publisher: Pabst Science Publishers, Lengerich, Germany.
- ISBN: 978-3-89967-820-8
RESPECT project dissemination meeting presentations (Brussels, 25 May 2011)
| Authors | Title |
|---|---|
| John Chaplin | Overview of the RESPECT project and the paediatric clinical trials landscape |
| Adriana Ceci | View from the Paediatric Committee of the EMA |
| Catriona Chaplin | Young patients’ and their parents’ experiences of clinical trials |
| Pia-Sophie Wool | Recruiting children to paediatric clinical trials – the view from the clinician |
| Annagrazia Altavilla | Involving children in decision-making – what are their rights? |
| Falk Wulf | How do families make the decision to participate? |
| Monika Bullinger | Patient-reported outcomes - what matters to the child? |
| Cristina Manfredi | Clinical trial networks – how can the patient or parent play an active part? |
| Liuska Sanna | What do patient organisations want their role to be? |
| Francis P. Crawley | Promoting transparency in European paediatric clinical research |
| (all) | Breakout workshop reports |
Conference presentations
| Authors | Title | Conference | Date |
|---|---|---|---|
| John Chaplin & the RESPECT project | How to improve recruitment and retention in paediatric clinical trials | Swedish Society of Medicine (SVLS) Annual conference, Stockholm | 30 Nov - 1 Dec 2011 |
| Annagrazia Altavilla | Research with children: current trends and perspectives | International Symposium: Convention on Human Rights and Biomedicine - updated or outdated?, Coimbra, Portugal | 12 July 2011 |
| Chaplin, Neubauer, Wulf, v. Mackensen, Sanna & Chaplin | Mutual Respect and Shared Goals for Clinical Trials on Children | 1st Global Congress for Consensus in Pediatrics & Child Health (CIP), Paris | 17-20 Feb 2011 |
| Wulf, Chaplin, Sanna, Neubauer, Crawley, Giaquinto, Ceci, Bullinger & Chaplin | RESPECT: Good practice in empowering families in clinical trials | PatientPartner final workshop: Patients Partnering in Clinical Trials, Brussels | 7-8 Dec 2010 |
| Chaplin, Chaplin, Pfeiffer-Mosesson & the RESPECT project | Securing children’s participation in clinical trials | Swedish Society of Medicine (SVLS) Annual conference, Gothenburg | 1-3 Dec 2010 |
| Sandberg, Chaplin & Chaplin | Beyond Informed Consent: Educating parents to empower them in the clinical trial process | Swedish Society of Medicine (SVLS) Annual conference, Gothenburg | 1-3 Dec 2010 |
| Chaplin, Pfeiffer-Mosesson & Chaplin | RESPECT project: Why do parents let their children participate in clinical trials? | Swedish pharmacists annual conference: Läkemedelskongressen, Stockholm | 20-21 Oct 2009 |
Publications
| Authors | Title | Journal | Date |
|---|---|---|---|
| Wulf F, Krasuska M & Bullinger M for the RESPECT Study Group | Determinants of Decision-making and Patient Participation in Paediatric Clinical Trials: A literature review | Open Journal of Pediatrics | Feb 2012 |
| A Altavilla, C Manfredi, P Baiardi, M Dehlinger-Kremer, P Galletti, A Alemany Pozuelo, J Chaplin, A Ceci | Impact of the new European paediatric regulatory framework on ethics committees: overview and perspectives | ACTA PAEDIATRICA | July 2011 |
| Andrea Sandberg | Masters thesis: Beyond Informed Consent - Educating patients to empower them in the clinical trial process | (Masters thesis, Uppsala University) | June 2010 |