The Journal of Haemophilia Practice (Dec 2023)

Recognising the importance of the research nurse and study coordinators in enhancing retention of people with haemophilia in clinical trials

  • Khair Kate,
  • Thykjaer Hanne,
  • Barazani-Brutman Tami,
  • Bellm Kelly,
  • Benjamin Christopher,
  • Wakefield Cindy,
  • Williams Nicola,
  • Wongwerawattanakoon Pakawan,
  • Zhong Huiqun,
  • Mulders Greta

DOI
https://doi.org/10.2478/jhp-2023-0017
Journal volume & issue
Vol. 10, no. 1
pp. 128 – 137

Abstract

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For retention in clinical trials of investigational medical products (CTIMPS), the strategy and tactics to keep enrolled participants from discontinuing participation (dropouts) are important. Haemophilia trials often have extended follow-up and require motivated participants who commit for the duration of the study, which may be underestimated at initiation. Study discontinuation may lead to inconclusive results and prolonged trials. Research nurses (RNs) and study coordinators (SCs) play an important role in clinical trials and are considered the link between principal investigator and study participants. We discuss the importance of the RNs and SCs in retention of participants, the barriers and challenges to retention, and the interventions utilised to support it.

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