Current and past research projects


current research projectsWithin the Rheumatology Research Group we currently have a wide variety of projects going on. Many of these projects already have an element of research partner involvement by patients and their family members (PPI). Here we would like to introduce a few of the projects.

Current projects

Evaluation of Information booklets

About this form

As researchers from the University of Birmingham, we are interested in hearing the views of family members (especially the brothers, sisters, sons and daughters) of people who have been diagnosed with rheumatoid arthritis (RA). We have developed an information leaflet specifically for relatives of people with RA who might be at risk of developing RA themselves, addressing a number of issues around this increased risk. The leaflet is entitled Am I likely to develop rheumatoid arthritis? A guide for relatives of patients with rheumatoid arthritis’ and covers topics such as ‘What is RA?’; ‘Am I at risk of RA?’ and ‘What can I do to find out more about my risk?’

We would like to invite you to give us your feedback on the leaflet using an anonymous online evaluation form. Before you do so, please read the participant information sheet. If you have further questions please contact either Dr Gwenda Simons or Dr Marie Falahee on +44 (0)121 3713235/ +44 (0)7505626368 or email

Please note that taking part in the online evaluation is voluntary, and it is entirely up to you to decide if you want to take part. However, please note that the form cannot be retracted once submitted due to its anonymous nature (i.e. you do not get a participant number or such like and you do not enter personal details such as your name or address).

Complete online evaluation now

Access to care and treatment for patients with primary Sjögren’s Syndrome...

Primary Sjögren’s syndrome (pSS) is an autoimmune condition primarily affecting fluid secreting glands. Inflammation within the glands reduces the production of tears and saliva, therefore, the characterising symptoms of pSS are dry mouth and dry eyes. Other symptoms include joint pain, bowel problems, extreme fatigue, and sleep disturbance. This range of symptoms, particularly dryness of the eyes, mouth and vagina can be associated with complications such as eye and mouth infections, tooth decay, peripheral neuropathy and cancer of the lymphatic system occurring in 5% of patients. The needs of patients with pSS are complex, however, very little patient focus research has been conducted in this area.

The early diagnosis and treatment of pSS may be beneficial as residual glandular tissue not yet destroyed by the inflammation process can respond to medication to stimulate fluid production. Also, disease modifying drugs may be used more routinely in the future to limit the damage cause by inflammation and prevent further destruction of glandular tissue. However, evidence from other conditions (particularly rheumatoid arthritis) illustrates that disease modifying drugs work best in the earliest phases of disease. However, little is known about the length of time between symptom onset, and the patient initially accessing help for symptoms. Furthermore, little is known about how long it takes general practitioners to recognise pSS, and make referrals to specialist services including Rheumatology and dental specialists.

University Hospitals Birmingham Foundation Trust (UHBFT) currently oversees the care of more than 100 patients with pSS, in addition to patients who have developed Sjögren’s in association with other auto-immune diseases. In addition, UHBFT is increasingly being recognised as a centre of clinical excellence in pSS, and we are keen to ensure that patients with pSS receive the best care and that their priorities and needs are recognised.

The aim of our research is to explore access to care, coping strategies and ways of promoting self-management in patients with pSS. Through qualitative interviews with patients with we will explore access to care and self-management behaviours amongst people with pSS. We will also undertake a cross-sectional survey of newly diagnosed patients with pSS exploring access to care at the onset of illness

Public and patient involvement in the design and development of health services is vital, therefore, we are keen to develop our partnerships with patients and relatives.
In collaboration with our patient partners we intend to identify the priorities of patients, and the areas of research which will have the largest benefit to patients.

For more information about this project, please contact Dr Rebecca Stack

Mind the risk...

mind-the-riskRecent advances in genetic science and technology have increased the possibility that the development and severity of diseases such as rheumatoid arthritis can be predicted before any symptoms occur. This provides exciting opportunities to develop strategies for disease prevention, and facilitates early diagnosis and effective treatment.

It is therefore likely that in future years, more and more people will have opportunities to access information about their genetic makeup, and the likelihood that they will develop diseases. This raises important ethical concerns and questions about the management and evaluation of genetic information, both for health care providers and patients.

Mind the Risk is an international collaboration of researchers in philosophy, psychology, medicine, health economics and bioethics which aims to provide answers to these questions, and to support the clinical application of genetic risk information. The project runs from 2014-2020, and is funded by the Swedish Foundation for Humanities and Social Sciences.

First degree relatives (children and siblings) of patients with rheumatoid arthritis are more likely to develop the disease than other members of the general public. Therefore they are likely candidates for initiatives to predict the development of this disease, and for preventive interventions. However, patients may have considerable anxieties about approaching their relatives about their risk of rheumatoid arthritis.

As partners in the Mind the Risk project, our aim is to understand the perspectives of both patients and their first degree relatives about risk of rheumatoid arthritis, risk communication, predictive testing, and preventive interventions. We shall employ a range of research methodologies, including qualitative interviews, large scale surveys, and preference elicitation experiments.

As we are interested in the perspectives of patients and their relatives, we welcome input from patient partners at all stages of this research, from the way it is designed to the way we communicate our findings to the public. To find out more, please contact Dr Marie Falahee.


Several members of R2P2 are supporting the £2.5 million Arthritis Research UK Rheumatoid Arthritis Pathogenesis Centre of Excellence (RACE). This is a collaboration between the universities of Birmingham, Glasgow, and Newcastle which aims to find out more about the mechanisms of auto-immunity that cause rheumatoid arthritis to start – and why it doesn’t stop. The ultimate aim of the centre is to develop new therapies to provide patients with specific treatment that work best for them early in the course of their disease, without the need to try a range of different drugs. You can find out more about RACE at

Past projects


The EuroTEAM (Towards Early diagnosis and biomarker validation in Arthritis Management) project was funded by the European Union (FP7 Health Programme) for 4 years and started in November 2012. Through EuroTEAM, approaches were developed to predict the onset of rheumatoid arthritis (RA) in people who do not yet have the disease. Ultimately, this will help in the development of treatments to prevent people from getting RA in the first place. The project was co-ordinated by Professors Chris Buckley and Karim Raza at Birmingham University and various members of the Rheumatology Research Group were involved in this pan-European project through a number of work packages (i.e. separate research projects). A video giving an overview of the project can be found here:

EuroTEAM involved patients and family members as research partners.  In this video Prof Karim Raza discusses the importance of involving patients in medical research, and how rheumatoid arthritis patients are (were) involved with the EuroTEAM research project:


A good example of a successful project involving patient research partners is the DELAY project. The DELAY project ( assesses reasons for delay in GP consultation reported by patients with Rheumatoid Arthritis (RA). The project has three phases. In the first, a questionnaire assessing reasons for delay was developed and validated. The second assessed the reliability of the questionnaire over time, by administering it to people with RA at two time points. The third surveyed a large cross-sectional sample of people with inflammatory arthritis to assess the reasons for delay in GP consultation in relation to socioeconomic and demographic variables.






(click the image to view the poster in PDF format)

The DELAY patient research panel has had a lot of impact on the project itself and the development of future research. For example, the need for the RAPID project has, in part, been identified by members of the user group supporting the DELAY study.


The Rheumatoid Arthritis the Public InformeD (RAPID; project started in December 2012 and officially finished at the end of 2015. It explored the perceptions of Rheumatoid Arthritis (RA) amongst members of the general public, their knowledge of RA and their reaction to the presentation of RA symptoms. RAPID is collaborative research between researchers from the University of Birmingham (Prof Karim Raza, Dr Rebecca Stack, Kanta Kumar & Dr Gwenda Simons) and the University of Keele (Prof Christian Mallen).

Rheumatoid Arthritis (RA) is a chronic condition which causes inflammation of the joints which can lead to joint destruction and has a profound impact on the lives of those suffering with it. Symptoms include joint pain, swelling and stiffness. Early diagnosis and treatment of RA results in better long-term outcomes, however people often delay for considerable periods before seeking help for RA symptoms. 

The RAPID project investigated perceptions and knowledge of RA amongst members of the general public without RA. Using interviews and surveys we further looked at how people would respond to experiencing the first symptoms of RA and investigated why people might or might not seek help for the symptoms of RA. Comparisons were also made with other illnesses such as bowel cancer and angina to understand better whether certain symptoms are easier to recognise and are associated with more rapid help seeking than others. 

This research has given us a better understanding of how people might react when they are in the very early stages of RA. The findings show that people often fail to recognise their symptoms as being indicative of a serious underlying condition. For example, symptoms are often confused with those of osteoarthritis or simply ascribed to getting older. The symptoms of diseases such as bowel cancer and angina on the other hand, are readily recognised and deemed serious enough to seek help promptly. Furthermore, due to recent public health campaigns, most people understand the potential consequences of ignoring the symptoms of bowel cancer and angina. It is likely that the misunderstandings surrounding the symptoms of RA will lead people to delay help-seeking. 

Involvement from R2P2 patient research partners in RAPID

RAPID had an active patient research panel of around 10 people. We have had a number of meetings and consultations with members of the panel. Several important changes to documentation and research design have occurred as a result. Members have further been involved in the development of lay summaries of the key research findings. Members also advised us on the content of the RAPID website and have had input in the development of public awareness interventions. 

Adherence to medication in RA...

Patients’ beliefs and perceptions play an important role in shaping their decisions about starting and continuing to take medications. Several studies have documented that there are differences between individuals from different ethnic groups in the way that medications are viewed. Poor adherence to prescribed medicines is an important issue as about 40 percent of patients with chronic diseases do not take their medications as prescribed. Treating conditions such as rheumatoid arthritis (RA) with disease modifying anti rheumatic drugs (DMARDs) significantly improves clinical outcomes. Recent work from our group has investigated beliefs about medicines in RA patients of South Asian and White British origin. Compared with patients of White British origin, those of South Asian origin had more concerns about DMARDs and viewed medicines in general as being harmful and overused. Of the variables that we studied, the one that associated most strongly with a belief that medicines in general were harmful and overused and that DMARDs in particular were of concern was ethnicity. In the first part of the project we assessed whether these beliefs had an impact on adherence to medicines using quantitative approach. In this study we want to investigate the barriers to poor medication adherence using qualitative approach. Patients who took part in the 1st phase and gave permission to be contacted will be invited for an interview to explore barriers and facilitators to medication adherence. Patients will be invited for a one to one, one hour interview to discuss issues surrounding medication adherence. Interviews will be audio recorded and transcribed by the researcher.

Kanta Kumar is a doctoral research fellow and this research forms part of Kanta’s PhD work. Other projects are currently being developed. For information about this and other projects, please contact Kanta Kumar on