Study Investigating Patient-Reported Outcomes in Lower-risk MDS Patients
This study, called PRO-RED, is for people with lower-risk myelodysplastic syndromes (MDS) or related conditions. We want to understand how MDS impacts their daily lives and how often they need blood transfusions. Participants will be followed for six months, checking in monthly. They'll use a smartphone app or paper questionnaires weekly to answer questions about their quality of life. During doctor visits, they’ll also complete special questionnaires. An exciting part of the study involves taking smartphone pictures of fingernails or eyelids. The aim is to see if these photos can help estimate blood iron levels, potentially leading to a new, easy way to monitor health without frequent blood tests in the future.
At a glance
What is this study about?
This study, called PRO-RED, is all about understanding what it's like to live with a condition called myelodysplastic syndrome (MDS) or similar disorders. MDS affects how your body makes healthy blood cells. We're particularly interested in people with 'lower-risk' MDS, which means their condition is less aggressive.
The main goal is to get a clearer picture of how MDS affects your daily life. This includes understanding how often you might need blood transfusions and how the condition impacts your overall well-being. By gathering this information directly from patients, we hope to improve care and support for people with MDS in the future.
Another interesting part of this study is exploring new technology. We want to see if smartphone photos of your fingernails or eyelids could help us estimate your haemoglobin levels – that's a key part of your red blood cells. If this works, it could offer a very simple and easy way for people to keep an eye on their health without needing frequent blood tests, making life a bit easier for those living with MDS.
Key takeaways
- The study helps understand daily life with lower-risk MDS.
- No new medicines are given; it's an observational study.
- Participants track their quality of life weekly via app or paper forms.
- Photos of fingernails/eyelids will be used to explore new ways to check blood levels.
- Your participation could help improve future MDS care.
Who may be eligible?
To join this study, doctors need to first confirm you have a specific type of myelodysplastic syndrome (MDS) that is considered 'lower-risk,' or a related condition like MDS/MPN. You must also have needed regular red blood cell transfusions (at least 3 units in the last 16 weeks) because of anaemia, which means your body doesn't have enough healthy red blood cells.
The study welcomes adults aged 18 and over, men and women alike.
However, you won't be able to join if your doctor believes you might not be able to follow the study's instructions or complete the necessary tasks.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Have I been diagnosed with lower-risk MDS or a related condition?
- Have I needed at least 3 red blood cell transfusions in the last 16 weeks?
- Am I aged 18 or older?
- Am I willing and able to regularly complete questionnaires and attend appointments?
What does participation involve?
If you decide to take part, you'll be involved for six months. During this time, you'll have regular visits to your doctor, at least once a month, where they'll check your health and how many blood transfusions you've received. At these monthly visits, you’ll also complete special questionnaires about your quality of life related to MDS.
In between your monthly doctor visits, you'll be asked to use a smartphone app or fill out paper questionnaires once a week to answer questions about your quality of life. This helps us understand how you're feeling on a more regular basis. You'll also use your smartphone camera to take pictures of your fingernails or eyelids. There are no new medicines given as part of this study; it's purely about observing and collecting information.
Potential risks and benefits
Locations (11)
- Universitätsklinik InnsbruckVerified postcodeInnsbruck, Austria
- Charité Universitätsmedizin BerlinVerified postcodeBerlin, Germany
- Klinikum Chemnitz gGmbHVerified postcodeChemnitz, Germany
- Gemeinschaftspraxis Hämatologie-OnkologieVerified postcodeDresden, Germany
- Universitätsklinikum Carl Gustav Carus an der Technischen Universität DresdenVerified postcodeDresden, Germany
- Universitätsklinikum DüsseldorfVerified postcodeDüsseldorf, Germany
- Universitätsklinikum JenaVerified postcodeJena, Germany
- University Hospital LeipzigVerified postcodeLeipzig, Germany
- Universitätsmedizin der Johannes Gutenberg-Universität MainzVerified postcodeMainz, Germany
- Universitätsmedizin MannheimVerified postcodeMannheim, Germany
- Friedrich-Ebert-Krankenhaus GmbHVerified postcodeNeumünster, Germany
Common questions
What is MDS?
MDS stands for Myelodysplastic Syndromes. It's a group of conditions where your bone marrow doesn't make enough healthy blood cells.
Will I take new medication?
No, this study doesn't involve any new medicines. It's an observational study, meaning we'll just gather information.
How long will I be in the study?
You will participate in the study for a total of six months.
Do I need a smartphone?
Yes, having a smartphone is helpful for the app and photo tasks, but paper questionnaires are also an option if you prefer or don't have a smartphone.
What is 'lower-risk' MDS?
Lower-risk MDS means your condition is not as aggressive as some other types, and it often progresses more slowly.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Discussion
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