Registries

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

  1. CML and MPN are considered relatively rare diseases and cases are scattered in several centers.
  2. Target therapies used in these neoplasms have novel mechanisms of action, are of recent onset and represent a high cost
  3. There is little data on “off-study” population (co-morbidity impact ? poly-pharmacy impact ?)
  4. 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
  • Transplantation

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.

 

For more information on the CML-MPN Quebec research group see sections MPN Resgistry and CML Registry