How your information will be collected
On this page:
How long do I have to enter my information for?
After you agree to take part, we would like to follow your progress for at least 12 months and no longer than 15 months.
If you are in the symptom tracking group, we would like you to enter your information into the REMORA app for a period of 12 months. If at 12 months, you haven’t been to the hospital recently, we may ask you to record your symptoms for more than 12 months until you have seen your rheumatology team.
If you are in the normal care group and haven’t been to the hospital recently, you will not receive an email to say you have completed the REMORA2 study until you have seen your rheumatology team.
Patients in both groups will also be asked to complete a web-based survey when you join the study and then again at 3, 6, 9 and 12 months. We will not ask you to complete any further surveys after the questionnaire at 12 months.
Do I have to do this every day?
Yes, you will be asked to complete various question sets using the REMORA app on a daily, weekly and monthly basis. The daily questions are short and can be completed in 2-3 minutes.
What do I do if I miss a day, or a few days of entries?
All of the symptom responses you give to the daily, weekly and monthly questions are made available to your health care professional. The more frequently you enter this information, the more information your health care professional has at your next clinic appointment.
If you miss a day or few days of entry, do not worry. You do not need to tell your health care professional or the study team at The University of Manchester. When you are able, continue to track your symptoms when next reminded by the app. If you miss several entries when you first start using the app, a member of the study team at The University of Manchester may contact you to see if you need any help.
Can somebody enter data for me?
No. We ask all participants in the REMORA2 trial to enter the data themselves. As part of this research, we are looking at how easy this app is to use in patients who suffer from RA.
The app is only available in English, and so you will also need to understand English or be supported by someone who can understand English and help you enter the information.
What kind of information should I put in the diary?
There is a diary function facility within the app, which is for your personal use only. Here, you may want to record details about your RA that was not captured by the app to share with your doctor at your next appointment.
The diary entries are stored separately on your phone and will not be accessible to anyone else. The study team at The University of Manchester or your doctor will not have access to this information. If you use the diary function and want to tell your doctor what you recorded, you will need to tell them when you see them at the hospital.
When you are no longer in the study, and if you are in the symptom tracking group, the REMORA app will still open, and you can still use the diary function (but you will not be able to access the daily, weekly or monthly questionnaires to record symptoms).
The REMORA2 study is expected to last for approximately 22 months. After the last patient has exited the study, you will automatically be notified via the app that the app will stop working. After this date, you will no longer be able to see the information stored in the diary.
Before this date, the study team at The University of Manchester will email to let you know. You will be given instructions on how to save your personal diary information to your phone or tablet, should you wish to do so.
In the Information for participants section: