Summary
Sign up to research opportunities online or attend an event in March if you’re interested in rare disease research.
An interactive research development workshop on rare disease and primary care will be held on Friday, 13 March in Warrington.
The full-day event is suitable for primary care academics, clinicians with an interest in rare diseases, rare disease researchers and industry partners curious about the future of primary care research in conditions.
It has been organised by the National Institute for Health and Care Research (NIHR) Research Delivery Network (RRDN), Manchester University NHS Foundation Trust and NF1 United (NF1U), which aims to improve care, research and outcomes for people with NF1.
You can register for a place via Eventbrite.
The NIHR has several other research opportunities for primary care:
- The SUCCESS study: The SUCCESS study seeks to investigate the enablers and barriers to the efficient self-monitoring of blood pressure in the home and community setting by exploring the experiences and perspectives of patients and health care professionals involved in self-monitoring of blood pressure. Participants will complete an online questionnaire and recruitment will be mapped back to practice where a GP practice name has been entered in the survey. There is also an option for health care professionals to complete the survey.
- DISCA (Sleepbuddy) study: University Hospital of Southampton have asked GPs in our region to display posters in their patient waiting rooms to advertise the DISCA (Sleepbuddy) study. The aim of this study is to see if a new website, Sleep Buddy, can help parents and carers of children aged six to 12 years with a diagnosis of ADHD, to improve their child’s sleep. Sleep Buddy was developed by parents and carers of children with ADHD working with sleep experts. It has personalised information and advice on how primary caregivers can manage their child’s sleep problems with videos and top tips from other parents. The website will help primary caregivers to create a sleep plan to help their child’s sleep.
- The INDIGO Community study: This study has been extended to June 2026. It uses questionnaires to help understand how a patient feels about their quality of life and experiences of care. Using a digital survey tool, the study hopes to run a project that will help understand more about the lives of patients after treatment for cancer. They plan to see which patient-reported outcome measures allow participants to express their quality of life as rated by the participants. The study will also explore how to keep the amount of time and effort needed to complete the questionnaires as low as possible.
The preliminary results of a North West RRDN-supported study, the STREAM Trial, have been published.
Otherwise known as the ‘Eat well, feel well, stay well’ trial, it assessed the effectiveness and cost-effectiveness of an intervention in primary care to encourage the use of malnutrition screen and treat policies for older people living in their own home.
The results suggest that no additional service is required within primary care to identify older people who may need supplementary nutritional support.
A full list of available studies in general practice can be found on the NIHR Primary Care Research Hub. You can also get in touch with the team by emailing: nw.rrdn@nihr.ac.uk
More information about clinical research and the work of NIHR NW RRDN can be found on the PCB website.
