Long term follow up: what are the implications on Research Delivery Staff?


Session type:


Nancy Hopewell1,Teresa Lockett1,Karthik Ramasamy1,Penny Williams2
1CRN: Thames Valley & South Midlands,2CRN: North East North Cumbria



Through the NIHR Clinical Research Network (CRN), thousands of people participate in portfolio studies. Over a number of years, there has been growing belief that the ongoing commitment to long-term follow up in cancer research has a potential impact on recruitment to recently open studies. Lack of data in this area has made it difficult to devise strategies to address this. CRN Thames Valley and South Midlands (CRN TVSM) designed and undertook a project to evaluate the workload of teams with regard to follow-up in open, recruiting and closed cancer studies. This is the first set of data from an LCRN describing long term follow up associated with delivery of portfolio cancer studies.


For consistency a date was chosen, 18th November 2014 and teams completed a census of cancer studies. Four trusts within CRN TVSM participated. Data included; study name, number of patients on treatment, those on follow up (at various time points) and recruitment status. This was repeated in 2015 and has also been used by CRN North East North Cumbria in 2016.


Results (2014) showed CRN TVSM had a commitment to > 5,000 participants on follow up in 326 cancer studies (140 open, 186 closed) culminating in > 10,000 contacts with research teams that year.


Using data, it is possible to;

  • Articulate follow up associated with cancer portfolio studies
  • Estimate WTE involved in follow up.

Replicating the project in other LCRNs will allow validation of our data. Strategies could be devised to ensure sufficient resources are directed to recruiting patients to open cancer portfolio studies. Future trial design needs to consider how follow up is delivered as efficiently as possible to enhance patient experience and the effectiveness of available resources.