Design2Code
Design 2 Code is Hemalytic’s premier program developer and designer of the tools that include, but not limited to, Calibra™, myWAPPS, myWAPPS Dashboard and myPROBE.
The stylish and functional design of our tools are a result of our ongoing collaborations with the professional team at Design 2 Code.
WAPPS-Hemo
WAPPS-Hemo (Web-Accessible Population Pharmacokinetic Service) was conceived and implemented as a solution to the barriers associated with tailoring prophylaxis using traditional PK approaches. It was created by Dr. Alfonso Iorio (McMaster University) in association with Dr. Andrea Edginton (University of Waterloo). It continues to be operated by the Health Information Research Unit (HiRU) at McMaster University, in collaboration with their partners the University of Waterloo and software developer Design2code.
WAPPS-Hemo is the first non-industry sponsored population pharmacokinetic Bayesian calculator. The software is a centralized, dedicated, web-accessible tool allowing the input of laboratory measurements of pre and post infusion plasma factor levels from FVIII or FIX hemophilia patients. It provides individualised PK estimates calculated on as few as 2-3 post–infusion samples of FVIII and FIX activity making tailored dosing feasible and convenient for both patients and clinicians. WAPPS-Hemo records individual PK profiles and uses those results to continuously refine the performance of the FVIII and FIX population PK models. Compared to current practice, using the software will substantially reduce the number of blood plasma samples required to determine an individual PK profile in patients and avoids both the need for a washout period, and for the administration of a standardized dose.
The clinical calculator in WAPPS-Hemo aids in converting an individual PK profile into a personalized treatment regimen. It assists with the calculations connecting dose, dosing intervals, and trough levels. For the regimen being investigated the software will calculate the projected weekly factor usage and the time spent above specific factor level thresholds during the week.
The integration of WAPPS-Hemo with the pre-existing Canadian Bleeding Disorders Registry (CBDR) has provided a unique opportunity for richer research by connecting individual tailored hemophilia regimens with individual hemophilia activities.
Utilizing WAPPS-Hemo regularly results in effective prophylaxis, optimized resource utilization, and ultimately in better care. For more information and the ability to sign up your centre, please visit www.wapps-hemo.org
Canadian Bleeding Disorders Registry
The Canadian Bleeding Disorders Registry (CBDR) is a clinical database for patients in Canada with bleeding disorders. Originally launched on July 1, 2015, the system is now widely utilized by the Canadian Hemophilia Treatment Centers (HTCs). CBDR is designed to be used on a daily basis by clinicians in all Canadian HTCs to assist in managing the treatment of people with bleeding disorders and to gain a better understanding of the incidence and prevalence of bleeding disorders. This information will also be used to understand demand for, and to facilitate ordering of, clotting factor products.
MyCBDR, the mobile device companion was also launched alongside with CBDR as a home care solution for most patients.
Both systems are managed by McMaster University, Hamilton, Ontario, on behalf of Association of Hemophilia Directors of Canada (AHCDC), a non-profit association of all HTC directors in Canada.
In Canada, the Canadian Bleeding Disorder Registry (CBDR) has been implemented by the Association of Hemophilia Center Directors of Canada to collect data from all Canadian PwHA. The CBDR program is a web-based hemophilia clinic management software with enhanced data sharing capabilities across the network of users. Two specific functionalities are especially relevant to this project: (1) feeding a national repository of hemophilia treatment data needed to measure outcomes in this population and (2) supporting a patient controlled personal health record module (MyCBDR), which allows patients to directly record factor treatment and bleeding logs. The system is hosted and maintained at the Health Information Research Unit of McMaster University (HiRU). A research-oriented module (CBDR-R) has been implemented to complement CBDR. The research module facilitates the selection and enrollment of patients against eligibility criteria for specific research projects and provides direct access to historical data for both current and future research projects. It also aids in the collection of ad-hoc data for specific studies, which are reusable for future quality assurance and or research endeavours.
CBDR has been recently integrated with two other tools, PROBE and WAPPS-Hemo, which now provides a unique and comprehensive opportunity to measure real-world patient data.
Further information is available at support.cbdr.ca
Patient Reported Outcomes, Burdens, and Experiences
What is PROBE?
The mission of the Patient Reported Outcomes, Burdens, and Experiences (PROBE) study is to investigate and directly probe patient perspectives on outcomes they deem relevant to their life and care. PROBE aims to develop a new global tool to enhance the direct patient-voice in health care decision-making.
Government and private payers increasingly value data based on patient-centered outcomes research as part of the overall cost-benefit evaluation of high-cost care and treatment of diseases such as hemophilia. This emerging dimension of the healthcare environment presents a significant opportunity and urgent need to improve patient organizations’ ability to collect and interpret relevant outcomes data. More robust patient reported data will improve advocacy efforts to build comprehensive care programs, promote home treatment and implement preventative treatment regimens thus allowing advocacy arguments to move beyond emotion and anecdote to those grounded in real-world patient experiences and evidenc12e.
Through PROBE we seek to validate the reliability, reproducibility and responsiveness of a low cost, easily administrable inventory for collecting patient self-reported outcomes, burdens and experiences in living with hemophilia. We anticipate that the metrics established through PROBE will allow for comparison of patient outcomes within a country over time and cross-sectionally between countries (regionally and globally).
PROBE is an independent investigator-led research project conducted as a multi-part study. Further information is available at www.probestudy.org
