Polycythemia VeraPAVENCT05853445
A Prospective, Non-interventional Study of JAKAVI® (Ruxolitinib) Treatment in Patients With Polycythemia Vera
An observational study of Polycythemia Vera, run by Novartis Pharmaceuticals at 99 sites in Germany.
Trial summary
Jakavi® therapy for polycythemia vera (PV) has so far been studied exclusively in clinical trials and at selected clinical trial centres. This observational study is intended to document the therapy of PV in daily practice with a broad patient population and a geographically representative selection of German centres… Read more about this study
- Who is it for?
- Ages 18 to 120 years
- Conditions the study is for
- Polycythemia Vera
- What is being tested?
- Jakavi
- How many people
- 467 participants
- Where
- 99 sitesGermany
- Study dates
- 17 Aug 2015to 3 May 2023
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 to 120 years
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: Adult male and female patients with PV for whom Jakavi® therapy is indicated.
Who may be able to join
- Adult male and female patients with PV for whom Jakavi® therapy is indicated according to the European summary of product characteristics
- Patients who have been informed about this NIS and gave written consent
Who cannot join
None listed.
Trial locations and contacts
99 sites in 1 country.
99 sites in 1 country
Germany99 sites
Novartis Investigative Site
Altötting, 84503
Novartis Investigative Site
Aschaffenburg, Bavaria, 63739
Novartis Investigative Site
Augsburg, Bavaria, 86152
Novartis Investigative Site
Augsburg, 86150
Novartis Investigative Site
Bad Homburg, 61348
Novartis Investigative Site
Bad Salzuflen, Northrhine Westfalia, 32105
Novartis Investigative Site
Bad Soden, 65812
Novartis Investigative Site
Bautzen, Saxony, 02625
Novartis Investigative Site
Berlin, 12351
Novartis Investigative Site
Berlin, 13357
Novartis Investigative Site
Bielefeld, 33604
Novartis Investigative Site
Bottrop, 46236
Novartis Investigative Site
Brake, Lower Saxony, 26919
Novartis Investigative Site
Chemnitz, 09113
Novartis Investigative Site
Cologne, 50671
Novartis Investigative Site
Cologne, 51103
Novartis Investigative Site
Donauwörth, Bavaria, 86609
Novartis Investigative Site
Dortmund, 44263
Novartis Investigative Site
Dresden, Saxony, 01127
Novartis Investigative Site
Dresden, 01307
Novartis Investigative Site
Duisburg, North Rhine-Westphalia, 47166
Novartis Investigative Site
Duisburg, 47166
Novartis Investigative Site
Düren, 52353
Novartis Investigative Site
Erfurt, Thuringia, 99084
Novartis Investigative Site
Erfurt, 99085
Novartis Investigative Site
Erlangen, Bavaria, 91052
Novartis Investigative Site
Essen, 45136
Novartis Investigative Site
Essen, 45147
Novartis Investigative Site
Frankfurt (Oder), Brandenburg, 15236
Novartis Investigative Site
Fürth, 90766
Novartis Investigative Site
Gera, 07548
Novartis Investigative Site
Goslar, 38642
Novartis Investigative Site
Göttingen, Lower Saxony, 37073
Novartis Investigative Site
Halberstadt, 38820
Novartis Investigative Site
Halle, 06110
Novartis Investigative Site
Hamburg, 20259
Novartis Investigative Site
Hamburg, 22081
Novartis Investigative Site
Hamelin, 31785
Novartis Investigative Site
Hamm, 59063
Novartis Investigative Site
Hamm, 59065
Novartis Investigative Site
Hanover, 30161
Novartis Investigative Site
Hanover, 30170
Novartis Investigative Site
Heidelberg, 69115
Novartis Investigative Site
Heidenheim, Baden-Wurttemberg, 89518
Novartis Investigative Site
Heilbronn, 74072
Novartis Investigative Site
Herrsching am Ammersee, Bavaria, 82211
Novartis Investigative Site
Hildesheim, 31134
Novartis Investigative Site
Hildesheim, 31135
Novartis Investigative Site
Hof, 95028
Novartis Investigative Site
Idar-Oberstein, 55743
Novartis Investigative Site
Iserlohn, Northrhine Westfalia, 58644
Novartis Investigative Site
Kaiserslautern, 67655
Novartis Investigative Site
Koblenz, 56068
Novartis Investigative Site
Kronach, 96317
Novartis Investigative Site
Landshut, Bvaria, 84036
Novartis Investigative Site
Leipzig, 04289
Novartis Investigative Site
Lemgo, 32657
Novartis Investigative Site
Loerrach, 79539
Novartis Investigative Site
Lübeck, Schleswig-Holstein, 23563
Novartis Investigative Site
Lüdenscheid, 58507
Novartis Investigative Site
Magdeburg, 39104
Novartis Investigative Site
Mannheim, Baden-Wurttemberg, 68305
Novartis Investigative Site
Marburg, 35037
Novartis Investigative Site
Mayen, 56727
Novartis Investigative Site
Memmingen, 87700
Novartis Investigative Site
Minden, 32429
Novartis Investigative Site
Moers, 47441
Novartis Investigative Site
Mülheim, 45468
Novartis Investigative Site
Munich, Bavaria, 80639
Novartis Investigative Site
Munich, Bavaria, 81241
Novartis Investigative Site
Münster, 48149
Novartis Investigative Site
Naunhof, 04683
Novartis Investigative Site
Nordhorn, 48527
Novartis Investigative Site
Nuremberg, 90403
Novartis Investigative Site
Nuremberg, 90419
Novartis Investigative Site
Nuremberg, 90449
Novartis Investigative Site
Offenburg, 77654
Novartis Investigative Site
Oldenburg, 26121
Novartis Investigative Site
Passau, 94036
Novartis Investigative Site
Pirna, Saxony, 01796
Novartis Investigative Site
Porta Westfalica, 32457
Novartis Investigative Site
Potsdam, 14467
Novartis Investigative Site
Reutlingen, Baden-Wurttemberg, 72764
Novartis Investigative Site
Rostock, 18057
Novartis Investigative Site
Rostock, 18059
Novartis Investigative Site
Rüsselsheim am Main, 65428
Novartis Investigative Site
Schöneck, 08621
Novartis Investigative Site
Schorndorf, 73614
Novartis Investigative Site
Stolberg, 52222
Novartis Investigative Site
Stuttgart, 70174
Novartis Investigative Site
Stuttgart, 70178
Novartis Investigative Site
Twistringen, Lower Saxony, 27239
Novartis Investigative Site
Westerstede, 26655
Novartis Investigative Site
Wiesbaden, 65189
Novartis Investigative Site
Winnenden, Baden-Wurttemberg, 71364
Novartis Investigative Site
Wittenberg, 06886
Novartis Investigative Site
Wolfsburg, 38440
Novartis Investigative Site
Würselen, 52146
Novartis Investigative Site
Würzburg, 97080
About this study
Official title: A Prospective, Non-interventional Study of JAKAVI® (Ruxolitinib) Treatment in Patients With Polycythemia Vera (PAVE)
Jakavi® therapy for polycythemia vera (PV) has so far been studied exclusively in clinical trials and at selected clinical trial centres. This observational study is intended to document the therapy of PV in daily practice with a broad patient population and a geographically representative selection of German centres (both hospitals and practices). The prospective mapping of daily practice reality is thus the main goal of this project.
Read the detailed description
To achieve meaningful results in accordance with the study objective and to obtain long-term data from daily clinical practice in a real-world setting, the observation period under Jakavi® therapy is specified as 36 months.
- Conditions
- Polycythemia Vera
- Being tested
- Jakavi
- Keywords
- ruxolitinib, polycythemia vera, PV, jakavi
- Medical subject headings
- Polycythemia Vera
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
JakaviOther
Also called Ruxolitinib
Prospective observational study. There is no treatment allocation. Patients administered Jakavi by prescription and administered according to the SmPC.
| Study group | Role | What they receive |
|---|---|---|
| JAK inhibitor naive | JAK inhibitor naive patients Receives: Other: Jakavi | |
| JAK inhibitor pre-treated | JAK inhibitor pre-treated patients (Jakavi® or any other JAK inhibitor for ≥3 months) Receives: Other: Jakavi |
What is being measured
The primary outcome is the main question the study is designed to answer.
Dosing
Number of patients by initial dosing and number of patients with dose modifications will be provided
Measured: Up to 36 months
Treatment interruptions
Number of patients with treatment interruptions
Measured: Up to 36 months
Overall survival
Overall survival for JAK inhibitor naive and pretreated patients
Measured: Up to 36 months
Hematology
Number of patients with changes in different blood count values over time (hematocrit, erythrocytes, thrombocytes, leukocytes)
Measured: Up to 36 months
Number of phlebotomies
Total number of phlebotomies
Measured: Up to 36 months
Change in spleen size (or volume)
Measured by palpation/sonography/CT/MRI
Measured: Up to 36 months
Quality of Life (QoL) - MPN-SAF TSS; MPN-10
The Myeloproliferative Neoplasm (MPN) Symptom Assessment Form Total Symptom Score (MPN-SAF TSS; MPN-10) questionnaire contains the ten most clinically relevant symptoms reported by patients with MPNs.
It includes disease related symptoms each scored from 0 (absent) to 10 (worst imaginable). Total Scores range from 0-100, with higher scores indicating a greater number of symptoms and severity.
Measured: Up to 36 months
Thromboembolic events
Number of patients with thromboembolic events.
Measured: Up to 36 months
Secondary outcomes (5)
Eastern Cooperative Oncology Group (ECOG) performance status
The ECOG performance status is a scale used to assess how a patient's disease is progressing, assess how the disease affects the daily living abilities of the patient, and determine appropriate treatment and prognosis.
The grade ranges from 0 (fully active, able to carry on all pre-disease performance without restriction) to 5 (dead)
Measured: Up to 36 months
Change in constitutional symptoms
Number of patients with change in constitutional symptoms
Measured: Up to 36 months
Quality of Life (QoL) - (SF-36)
The Short Form-36 questionnaire consists of questions measuring physical function, physical role limitation, pain, general health, vitality, social function, emotional role limitations, and mental health status. The scores that can be obtained from the scale vary between 0 and 100 and the increase in the scores indicates that the quality of life is high.
Measured: Up to 36 months
Bone marrow aspiration and biopsy
Number of Biopsies per visit
Measured: Up to 36 months
Molecular examination
Number of performed assessments of JAK2V617F mutation per visist
Measured: Up to 36 months
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted10 May 2023
- Study start17 Aug 2015
- Primary completion3 May 2023
- Study completion3 May 2023
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Polycythemia VeraStudies of the same condition, open and under way.
- More trials run by Novartis PharmaceuticalsThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 467 participants (actual)
Sponsor and investigators
- Lead sponsor
- Novartis Pharmaceuticals
- Sponsor type
- Industry (pharma, biotech, devices)
- Responsible party
- Sponsor
- Investigators
- Novartis Pharmaceuticals, Study director, Novartis Pharmaceuticals
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05853445
- Sponsor's protocol ID
- CINC424BDE12
- Acronym
- PAVE
- Status last verified
- May 2024
- First submitted
- 2 May 2023
- Last updated
- 6 May 2024
- Results posted
- No
- Individual data sharing
- No
Study at a glance
From the registry record, last updated by the sponsor on 6 May 2024. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- A Prospective, Non-interventional Study of JAKAVI® (Ruxolitinib) Treatment in Patients With Polycythemia Vera (PAVE)
- ClinicalTrials.gov ID
- NCT05853445
- Acronym / sponsor ID
- PAVE / CINC424BDE12
- Conditions
- Polycythemia Vera
- Keywords
- ruxolitinib, polycythemia vera, PV, jakavi
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 467 participants (actual)
- Lead sponsor
- Novartis PharmaceuticalsIndustry (pharma, biotech, devices)
- Study start
- 17 Aug 2015 (actual)
- Primary completion
- 3 May 2023 (actual)
- Study completion
- 3 May 2023 (actual)
- First posted
- 10 May 2023 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
Jakavi® therapy for polycythemia vera (PV) has so far been studied exclusively in clinical trials and at selected clinical trial centres. This observational study is intended to document the therapy of PV in daily practice with a broad patient population and a geographically representative selection of German centres (both hospitals and practices). The prospective mapping of daily practice reality is thus the main goal of this project.
Detailed description
To achieve meaningful results in accordance with the study objective and to obtain long-term data from daily clinical practice in a real-world setting, the observation period under Jakavi® therapy is specified as 36 months.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| JAK inhibitor naive | – | Other: JakaviJAK inhibitor naive patients |
| JAK inhibitor pre-treated | – | Other: JakaviJAK inhibitor pre-treated patients (Jakavi® or any other JAK inhibitor for ≥3 months) |
Who may qualify
- Ages
- 18 to 120 years
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- Adult male and female patients with PV for whom Jakavi® therapy is indicated.
Key inclusion criteria (2 listed)
- Adult male and female patients with PV for whom Jakavi® therapy is indicated according to the European summary of product characteristics
- Patients who have been informed about this NIS and gave written consent
Key exclusion criteria (0 listed)
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| JakaviAlso: RuxolitinibProspective observational study. There is no treatment allocation. Patients administered Jakavi by prescription and administered according to the SmPC. | Other | JAK inhibitor naive, JAK inhibitor pre-treated |
Primary outcome
Dosing
Time frame: Up to 36 months
Number of patients by initial dosing and number of patients with dose modifications will be provided
Treatment interruptions
Time frame: Up to 36 months
Number of patients with treatment interruptions
Overall survival
Time frame: Up to 36 months
Overall survival for JAK inhibitor naive and pretreated patients
Hematology
Time frame: Up to 36 months
Number of patients with changes in different blood count values over time (hematocrit, erythrocytes, thrombocytes, leukocytes)
Number of phlebotomies
Time frame: Up to 36 months
Total number of phlebotomies
Change in spleen size (or volume)
Time frame: Up to 36 months
Measured by palpation/sonography/CT/MRI
Quality of Life (QoL) - MPN-SAF TSS; MPN-10
Time frame: Up to 36 months
The Myeloproliferative Neoplasm (MPN) Symptom Assessment Form Total Symptom Score (MPN-SAF TSS; MPN-10) questionnaire contains the ten most clinically relevant symptoms reported by patients with MPNs. It includes disease related symptoms each scored from 0 (absent) to 10 (worst imaginable). Total Scores range from 0-100, with higher scores indicating a greater number of symptoms and severity.
Thromboembolic events
Time frame: Up to 36 months
Number of patients with thromboembolic events.
5 secondary outcomes
Eastern Cooperative Oncology Group (ECOG) performance status
Time frame: Up to 36 months
Change in constitutional symptoms
Time frame: Up to 36 months
Quality of Life (QoL) - (SF-36)
Time frame: Up to 36 months
Bone marrow aspiration and biopsy
Time frame: Up to 36 months
Molecular examination
Time frame: Up to 36 months
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 6 May 2024.
- Results for CINC424BDE12 that is getting linked from the Novartis Clinical Trials WebsiteLink provided by the sponsor.
- Individual participant dataSharing planned: No
Related trials for Polycythemia Vera
RecruitingPhase 3
A Phase 3 Study of Pelabresib (DAK539) and Ruxolitinib in Myelofibrosis (MF)
Primary Myelofibrosis (PMF), Post-polycythemia Vera Myelofibrosis (PPV-MF)
RecruitingPhase 2/3
A Clinical Trial of Bomedemstat in Participants With Polycythemia Vera (MK-3543-025).
Polycythemia Vera
RecruitingPhase 2
Study of Momelotinib in Combination With Luspatercept in Participants With Transfusion Dependent Myelofibrosis
Primary Myelofibrosis, Myelofibrosis; Primary Myelofibrosis; Post-polycythemia Vera Myelofibrosis; Post-essential Thrombocythemia Myelofibrosis
RecruitingPhase 2
A Study of Ropeg-Interferon in People With Polycythemia Vera
Polycythemia Vera (PV), JAK2 Mutation
Active, not recruitingPhase 2
A Phase 2, Open-Label Study of DISC-3405 in Participants With Polycythemia Vera (PV)
Polycythemia Vera (PV)
Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Novartis Pharmaceuticals study director
Novartis Pharmaceuticals
99 sites in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Polycythemia Vera, run by Novartis Pharmaceuticals at 99 sites in Germany.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 2 inclusion and 0 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 6 May 2024. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 99 sites in Germany. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Dosing (time frame: Up to 36 months). The study lists 8 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 6 May 2024.