SARC-NET: Paving the way for public participation in sarcopenia research
In a project funded by the NIHR Newcastle Biomedical Research Centre (BRC), researchers have facilitated patient participation in sarcopenia research through a brand-new dedicated registry.
Background
The NIHR Newcastle BRC is the only BRC in England to focus on understanding more about, and improving the treatments for, age-related syndromes and long-term conditions. One of the key areas of study within our Ageing Syndromes theme is sarcopenia; a loss of muscle strength and mass as we age. It can lead to serious health issues; increasing disability, falls and the need for increased health and social care. It also links with many other conditions where underlying disease leads over time to a loss of muscle strength and size. It is therefore vital to learn more about this area and translate this understanding into benefits for people affected.
A major challenge in understanding more about sarcopenia is that although the condition is common, it is not often diagnosed or recorded in medical records. This makes it challenging for researchers to find and contact people with sarcopenia, which has made recruitment to studies of sarcopenia difficult to do. Without a solid understanding of the condition, nor a readily available cohort of patients ready to take part in future clinical trials, it is difficult to find new treatments to prevent or improve sarcopenia.
The project
The goal of this project was to invest resource in sarcopenia research, giving recruiting sites the experience, equipment and recruiting pathways that are needed to , find and recruit people with sarcopenia to future research studies.
This was done in two ways;
- Create a network of recruiting sites with experience in diagnosing and assessing sarcopenia, gaining regulatory approvals, and conducting clinical research with patients with sarcopenia
- Develop a registry of patients with sarcopenia (and related conditions such as pre-sarcopenia), with information on multimorbidity, medications, phenotype and willingness to participate in future trials
Together, this solution comprises the UK Sarcopenia Research network, and UK Sarcopenia Registry.
The team involved have so far successfully set up a network of six centres and demonstrated that the recruitment strategy was successful. Principal Investigator for the study, Professor Miles Witham commented:
We have not only demonstrated a more efficient recruitment process, but almost all participants agreed to join the registry for recontact too. This has so far allowed us to gather valuable baseline and follow up data to both characterise the registry population and validate some sarcopenia measures for future trials.
COVID-19 restrictions have altered recruitment targets and the processes planned for follow-up contact, but even despite these challenges, the team has successfully gathered enough data to analyse for validation. Professor Witham adds:
Even in challenging circumstances, we have managed to move this project on significantly. We have built the network and database, proven that we have a workable model for setting up remote sites and have demonstrated that the recruitment system is fit for purpose.
We’re also delighted by our participant feedback, not only in sharing their valuable thoughts on the recruitment process, but also in agreeing to be contacted by us again*
*98% of enrolled participants agreed to this.
Next steps
The team are working on two newly funded projects that will make use of this valuable resource; the NIHR Newcastle BRC funded, MET-PREVENT, the Acipimox feasibility study, funded by MRC Confidence in Concept.