RESPECT Patient Needs

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At a Glance
  • Status: Completed Consortium
  • Year Launched: 2008
  • Initiating Organization: European Commission’s 7th Framework Programme
  • Initiator Type: Government
  • No disease focus

Abstract

The European research project RESPECT (Relating Expectations and needs to the Participation and Empowerment of children in Clinical Trials), led by the Institute of Clinical Sciences at the Sahlgrenska Academy at Gothenburg University, Sweden, set out to identify the needs and motivations of children and their families who have participated or might participate in clinical trials in Europe.

They explored the issues raised by children's participation in medical research by speaking with pediatric patients and their parents, patient support organizations, pediatricians, ethical committees, and representatives of the pharmaceutical industry to gather their experience, insights, and suggestions. This enabled RESPECT to make recommendations for how to empower children such that medical researchers respect their interests and can motivate their participation in future clinical trials.

Mission

The objective of the RESPECT project is to identify the needs of children and their families
as related to outcomes in clinical trials. This will include the needs of children who have
participated or who might participate in clinical trials in Europe. Secondly, to identify
methods by which these needs can be translated into empowering and motivating
participants in future clinical trials research.

RESPECT is also exploring the ethical issues involved in children’s participation in medical
research and contacting ethical committees, patient support organizations, pediatric
patients, and their parents to gather their insight and suggestions.

Structure & Governance

The project coordinator is the Institute of Clinical Science at the Sahlgrenska Academy at Gothenburg University (Sweden)

Financing

Funded under the European Union’s 7th Framework Programme

Patient Engagement

Patients and their parents were contacted to gather their insights, experience, and suggestion about their participation or potential participation in clinical trials.

Points of Contact

Catriona Chaplin, PhD
Catriona.chaplin@vgregion.se
www.patientneeds.eu
info@patientneeds.eu

Sponsors & Partners

European Patients’ Forum

Consorzio Valuazione Biologiche e Farmacologiche

University Medical Center Hamburg – Eppendorf Department of Medical Psycology

Good Clinical Practice Alliance Europe

University Children’s Hospital Ljubljana and the Foundation of Child Neurology

Azienda Ospedaliera di Padova

Last Updated: 06/21/2017
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