To fulfill its mission to optimize the management of CML and MPN by developing tools, approaches and methods, the CML-MPN Quebec Research Group realized the importance of developing registries.
Interest of the registries in CML and MPN
- Target therapies used in these neoplasms have novel mechanisms of action, are of recent onset and represent a high cost
- There is little data on “off-study” population (co-morbidity impact ? poly-pharmacy impact ?)
- Long term side effects in a large population are unknown.
Avantages of Registries
As a tool that provides a real-time picture of the clinical condition of “off-study” patients
- Medical and surgical history
- Information at diagnostic
- Treatments / compliance / side effects / management of side effects
- Hematology / biochemistry / medulogram / cytogenetic / mutations / molecular biology
- Treatments efficacy / resistance / quality of life
- Concomitant medications
As a tool to enhance continuing professional development
- Evaluate medical practice in regards to current established guidelines;
- Identify the needs for continuing professional development.
As a tool to facilitate clinical research
- Validation and feasibility evaluation of clinical trials;
- Identification of potential patients for trials;
- Recruitment of participants through a multicenter process via a single point of contact.