A ELN-Multicenter Study on Phenotypic Evolution and Clinical Outcomes
This study is an international research project examining two blood conditions: Polycythemia Vera and Thrombocythemia. Researchers are looking back at patient records to understand how these conditions develop and change over time. They are particularly interested in people who first had Thrombocythemia and later developed Polycythemia Vera. By carefully comparing these patients with others who had only one of the conditions, the study aims to uncover important patterns and insights. This research is important because it could help doctors better predict how these diseases might progress and potentially lead to improved ways of managing them in the future. It's a way of learning from past patient experiences to help those living with these conditions today and tomorrow.
At a glance
What is this study about?
This study is a big international research project focused on two types of blood conditions: Polycythemia Vera (PV) and Thrombocythemia (ET). Both conditions involve problems with the bone marrow, which is where your blood cells are made. Researchers want to understand more about how these diseases work and how they might change over time in different people.
Specifically, the study is looking at patient records from the past. It's divided into two main parts. The first part compares people who initially had ET and then, over time, developed PV. These patients are called 'cases.' They are then carefully matched with other patients who had ET but did not develop PV. This matching is done based on things like when they were diagnosed and their age, to make sure the comparison is fair. By looking at these two groups, researchers hope to find out what might be different about the 'cases' that led them to develop the second condition.
The second part of the study also looks at people with PV, but these are individuals who developed PV from the start, without having ET first. These patients are compared to the group who developed PV after having ET, again using careful matching. This helps the researchers understand if PV that develops from ET is different from PV that appears on its own. Ultimately, this research aims to help doctors understand the 'life story' of these conditions better, which could lead to better ways to diagnose, monitor, and treat patients in the future.
Key takeaways
- This study is about understanding how Polycythemia Vera and Thrombocythemia develop.
- It uses past patient medical records, so no new tests or treatments are involved.
- Researchers are comparing different groups of patients with these conditions.
- The goal is to improve understanding and future care for patients.
- Your data would be kept confidential and used anonymously.
- It's a 'look back' study, learning from previous patient experiences.
Who may be eligible?
This study is looking back at records of adults aged 18 to 100 who have been diagnosed with certain blood conditions. The main group they are interested in are people who first had a condition called Thrombocythemia (ET) and then later developed Polycythemia Vera (PV).
To be included, your original ET diagnosis and later PV diagnosis must have met specific medical guidelines from 2022. Also, your PV diagnosis must have been made by the end of 2020. Another important factor is that for those who had ET first, they must have a specific gene change called JAK2V617F.
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.
- Were you diagnosed with Thrombocythemia (ET) first?
- Then, did you later develop Polycythemia Vera (PV)?
- Was your PV diagnosis made by December 31, 2020?
- Do your records show you have the JAK2V617F gene change?
- Are you between 18 and 100 years old?
What does participation involve?
This is a 'retrospective' study, meaning researchers are looking at existing patient medical records from the past. You wouldn't need to do anything extra, like take new medication, have extra appointments, or undergo additional tests. Your past medical information, which has already been collected as part of your regular care, would be reviewed by the research team. There are no direct visits, assessments, or follow-ups required from you for this study, and therefore no specific duration for your direct involvement.
Potential risks and benefits
Locations (25)
- Mayo ClinicVerified postcodeRochester, United States· Not yet recruiting
- University Hospital HalleVerified postcodeHalle, Germany· Not yet recruiting
- Hannover Medical SchoolVerified postcodeHanover, Germany· Not yet recruiting
- University Clinic for Hematology, Oncology, Hemostaseology and Palliative Care Johannes Wesling Medical CenterVerified postcodeMinden, Germany· Not yet recruiting
- Divisione Ematologia, Fondazione IRCCS Policlinico San MatteoVerified postcodePavia, Italy· Not yet recruiting
- Divisione Ematologia, Ospedale San BortoloVerified postcodeVicenza, Italy· Not yet recruiting
- A.S.O. SS. Antonio e Biagio e C.Arrigo, SC EmatologiaVerified postcodeAlessandria, Italy· Not yet recruiting
- ASST Papa Giovanni XXIII, SC EmatologiaVerified postcodeBergamo, Italy· Recruiting
- ASST-Spedali CiviliVerified postcodeBrescia, Italy· Not yet recruiting
- Ospedale BusincoVerified postcodeCagliari, Italy· Not yet recruiting
- AOU Policlinico Vittorio Emanuele - PO Gaspare RodolicoVerified postcodeCatania, Italy· Not yet recruiting
- AOU Careggi, Divisione di EmatologiaVerified postcodeFlorence, Italy· Not yet recruiting
Common questions
What is Polycythemia Vera (PV)?
It's a rare blood disorder where your body makes too many red blood cells, which can make your blood thicker and increase your risk of blood clots.
What is Thrombocythemia (ET)?
It's a condition where your body makes too many platelets, which are tiny blood cells involved in clotting. This can lead to bleeding or clotting problems.
Will I have to take any new medicine if I take part?
No, this study only looks at existing medical records. You won't be asked to take new medicine or undergo new treatments.
How will my privacy be protected?
Researchers will keep your personal information private and follow strict rules to protect your confidentiality. Your name or other identifying details won't be shared.
Why is this research important?
By looking at past patient information, doctors hope to learn more about how these blood conditions change and progress. This could lead to better ways to help people living with them in the future.
How to find out more
TIZIANO BARBUI, MD
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
Community discussion
Powered by our forum at community.patient.info. Please be respectful — this is not medical advice.