Article Text

PDF

O-168a Young People And Family Involvement In Paediatric Research Networks: Outcomes Of A Survey Among Enpr-ema Networks
  1. B Pelle1,
  2. P Helms2,
  3. J Drabwell3,
  4. J Preston4,
  5. M Turner4,
  6. I Eichler1
  1. 1Paediatric Medicines, European Medicines Agency, London, UK
  2. 2Scottish Children’s Research Network, Scottish Children’s Research Network, Aberdeen, UK
  3. 3International Patient Organisation for Primary Immunodeficiencies, International Patient Organisation for Primary Immunodeficiencies, Downderry, UK
  4. 4NIHR Clinical Research Network, Children, Liverpool, UK

Abstract

Background and aims Engaging and involving young people in clinical research has many benefits including greater understanding of young people’s perspectives and improvements in study design and the quality of clinical research.1 The nature and extent of support for the engagement of young people in research in Europe is unclear.

Methods A survey was sent to members of the European network of paediatric research at the EMA (Enpr- EMA),2 (Figure 1).

Results While more than half of the responding networks (N=17) actively involve young people/families, only 3 networks have dedicated resources and strategies in place to support this activity,3–5 (Table 1). Activities undertaking with young people/families in Enpr-EMA networks are summarised in Table 2.

Conclusions The majority of networks requested guidelines on establishing and maintaining young people’s advisory groups and/or identified the need for training for this activity. Responsible and effective involvement of young people/family in paediatric clinical research has been established only in some European networks and should be generalised urgently.

Acknowlegements Not applicable.

References 1 Newman J, Callens C, Tibbins C, and Madge N (2012) Medicines for children: reflecting on how young people improve research. In Fleming J and Boeck T (eds) Involving Children and Young People in Health and Social Care Research, Routledge, London, UK, pp 165–174

2 Enpr-EMA webpages: http://www.ema.europa.eu/ema/index.jsp?curl=pages/partners_and_networks/general/general_content_000303.jsp and mid=WC0b01ac05801df74a

3 The Scottish Children’s Research Network (ScotCRN) Young Persons Group. Available at: http://www.scotcrn.org/young-people/straegy-documentation/

4 Medicines for Children Research Network Consumer Involvement Strategy 2012–2015. Available at: http://www.mcrn.org.uk/images/stories/consumer/consumer_strategy_sept_2013_jn1.pdf

5 Mother Infant Child Youth Research Network: Young Persons as Research Ambassadors and Advisors. Available at: http://www.micyrn.ca/CreatingAndConnectingNetwork.asp

Abstract O-168a Figure 1

List of survey questions on involvement of young people and family members in the Enpr-EMA paediatric clinical trial networks

Abstract O-168a Table 1

Engagement of young people and family members in Enpr-EMA networks

Abstract O-168a Table 2

Specific activities undertaken with young people and family members in Enpr-EMA networks

Statistics from Altmetric.com

Request permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.