Together we get rheumatoid arthritis under control
The Citizenlab is a collaboration of various knowledge institutions, healthcare organizations, foundations, businesses and citizens. The Citizenlab conducts research to improve health, well-being and quality of life.
The Citizenlab focuses, among other things, on rheumatoid arthritis. This is a chronic condition that can have a great impact on people’s lives. In the Citizenlab, we would like to work with people with rheumatoid arthritis to conduct research into questions that affect them.
People with rheumatoid arthritis have a lot to offer for scientific research. By experiencing the condition on a daily basis, they have gained a lot of knowledge. Therefore they may know which topics are important, what is currently lacking in the area of care, or what is not going well in their care or daily life. The questions that arise can lead to research. People with rheumatoid arthritis can also contribute by shaping the research so that it is effective and meets the wishes of participants. Through strong collaboration, we will hopefully achieve great results for both people with rheumatoid arthritis and science!
Would you like to stay informed about the research in the field of rheumatoid arthritis in the TOPFIT Citizenlab? Check this website regularly, follow us on Facebook or Twitter or send a mail.
A citizen science website
People with rheumatoid arthritis know better than anyone how it is to live with this condition. This experiential knowledge is very valuable in research and we would like to incorporate this in the TOPFIT Citizenlab. In the past period we have asked patients with rheumatoid arthritis how patients and researchers can best cooperate, through conversations, a survey, group conversations and evaluation sessions.
The idea of a website on which patients and researchers can work together was very well received. On such a website, patients can, for example, put forward research ideas, start their own research or join research conducted by others. They can submit data about themselves on the website, in order to gain insight for themselves, but also to increase scientific knowlegde.
Together with people with rheumatoid arthritis, we have designed the first research that will take place on the website. In the coming period we will build the website together with Sport Data Valley and start the first research. Are you curious about this project? Then keep an eye on this website.
You can find the detailed results of the conversations and the survey on the first ideas of a citizen science website here.
You can find the detailed results of the group conversations and the evaluation sessions on designing the citizen science website here.
You can find the detailed results of the group conversations about designing the first research here.
This short video explains the concept of the website portal.
Results survey about the HandScan
Our first research focused on monitoring visits and the possible use of the HandScan in the process. The HandScan is a new device from Demcon Hemics that can measure inflammatory activity in the joints of the hand. More than 400 people gave their opinion via a survey.
In general, people with rheumatoid arthritis are satisfied with the way in which inflammatory activity is monitored now (before the corona crisis). However, about half would prefer more imaging studies (think of MRI, CT-scan, X-rays). In addition, people seem to perceive an added value of the HandScan, mainly because the HandScan provides a quick and clear picture of the location and severity of inflammations in the hand.
You can find the detailed results of the questionnaire here.
You can find the scientific paper about the questionnaire here.
You can also view the research and the results in this video.