Patient with MPN (essential thrombocytosis (ET), polycythemia vera (PV) and myelofibrosis (MF) have received far less therapeutic progress than those with CML over the last decade. Collecting data on treatment choices, response therapies and side effects would help to caracterize unmet medical needs in the population of patients with MPN and to help optimize care and treatment of these patient. The purpose of the MPN registry is to identify and caracterize the not satisfied medical needs of the population by :
- Providing epidemiological and descriptive data on current trends in diagnosis and therapeutic intervention;
- Describing the impact of treatment on the quality of life of patients;
- Describing the adverse effects of treatments and the effectiveness of their management.
In addition, this registry provides a list of participants who have agreed to be recontacted for future studies approved by their institution’s Research Ethics Board (REB), to assess medical practice and to identify the need for Professional development among physicians.
Recruitment for the LMC-NMP GQR NMP Registry began on March 5, 2015. To date, 7 sites have been activated and more than 400 participants have been recruited.
Participating sites and local principal investigator
- Hôpital Maisonneuve-Rosemont – Dr Lambert Busque
- Hôpital général Juif – Dre Shireen Sirhan
- CHU de Québec – Dr Robert Delage
- Hôpital du Sacré-Cœur de Montréal – Dre Inès Chamaki
- Cité de la Santé de Laval – Dre Danielle Talbot
- Hôtel-Dieu de Lévis – Dr Marc Lalancette
- Hôpital Charles-LeMoyne – Dr Pierre Desjardins
- Hôpital Ste-Mary – Dr Jaroslav Prchal (coming soon)
- Centre hospitalier universitaire de Sherbrooke – Dr Michel Pavic (coming soon)