Clinics & Inpatient Care Units
Hemophilia Comprehensive Care Program
June 2019 enewsletter
All of you who are on home infusion of factor VIII, factor IX, or other concentrates are aware of the importance of maintaining treatment diaries. In the past, this was cumbersome and not standardized. In the last few years, technology has transformed the task of maintaining diaries from a frustrating and not very helpful exercise to a user-friendly and extremely valuable one.
All of you who have a smartphone or internet computer access should by now be using the electronic diary MyCBDR. This is a simple app that lets you quickly and easily enter every infusion. When you do so, the information is simultaneously entered into the Hemophilia database at our clinic (CBDR-the Canadian Bleeding Disorders Registry). When you come for your clinic appointment we can open the CBDR program with you, review your treatments, and make any adjustments to your regimen that would improve your bleeding control, and make your treatments as efficient as possible.
Many of you have also had pharmacokinetic (PK) studies done as well, in which we take three blood samples over two very brief clinic visits in a 24 to 48 hour period. Using an online calculator this allows us to accurately predict where your factor VIII or factor IX level will be at any point after your infusion. Combining the PK data with the data you have entered in MyCBDR, we can adjust your dose and treatment schedule to provide optimal control with optimal convenience.
We can only do this if you use MyCBDR, and if you keep it up to date. Please take the few extra moments to enter every treatment immediately after the infusion, whether it was for prophylaxis or to treat a bleed. This is essential to allow us to give you the best care possible. We will review your CBDR entries at every clinic visit.
CBDR and MyCBDR are national programs, used across the country (in B.C. they use another program called iCHIPS which is being made compatible with CBDR). We want to assure you that your confidentiality is maintained. When you enter infusion information into MyCBDR it appears only in the CBDR program at our Hemophilia Clinic. Nobody outside our clinic team can see any data that you enter. Furthermore, if any doctor or nurse wants to do a research project using information in CBDR, this would require individual consent from every patient whose data is involved.
We thank you for your cooperation. Those of you who attended the Canadian Hemophilia Society’s Rendez-vous symposium in Montreal in late May will know that awards were given to clinics whose patients had provided the most up-to-date CBDR entries. We want to win that award next year! We depend on you to get us there.
Thanks for reading,
The St. Michael’s Hemophilia Team
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