What is the purpose of this registry?
The COVID-19 Palliative Registry aims to create a prospective national registry of baseline characteristics and clinical outcomes of patients with life-limiting illnesses and suspected or laboratory confirmed or COVID-19. This registry will assist quality improvement and surveillance efforts on a national level, to improve palliative care provided to people with life-limiting illnesses and COVID-19.
How is the data from this registry going to be shared/disbursed?
The data will be shared 1) directly on the website http://CVH INTERNAL LINK to Current Data, 2) through listservs and social media, and 3) via scholarly publications.
Who should fill out the Case Report Form?
Any clinician that provides palliative care to patients may participate and report patients into the COVID-19 Palliative Registry. This includes (but not limited to) family physicians, oncologists, internists, geriatricians, respirologists and specialist palliative care clinicians. Clinicians who provide palliative care in any sector can report data, including acute care, long-term care, complex continuing care, home care, palliative care units, hospice and the community.
When should I fill out a Case Report Form?
If you have a patient you have provided palliative care to and they have a life-limiting illness and suspected or laboratory confirmed or COVID-19 then please complete the form after a minimum of 7 days or if it has been determined that sufficient time has passed to observe the disease course through resolution of acute illness or death of the patient.
How long will it take to complete the survey?
It will take approximately three to five minutes to complete the survey.
Once a survey has been submitted, can it be re-accessed or edited at a later time? What if I have updated information about a case after submission?
Once a survey has been submitted it can not be re-accessed or edited at a later time. However, if you have updated information or any changes since you have reported a case, please re-report the case and email COVIDRegistry@virtualhospice.ca to ask our team to remove the duplicate entry.
Can patients fill out the Case Report Form?
No, the Case Report Form is designed to be filled out by a healthcare provider. Patients or caregivers interested in having their information added to the registry should encourage their health care provider to complete a Case Report Form on their behalf.
I am a patient. How can I help?
Thank you for your interest in helping! Please consider asking your health care provider to report on our website.
What steps have been taken to ensure the security of the data?
We have created a registry that contains only de-identified data. Our database system (Qualtrics) provides for secure web-based data entry with the data stored on secure servers. All data is encrypted during transmission and download. Access to the data will be limited to the University Health Network Study Team.
Will this registry lead to care recommendations or guideline development?
Yes, we hope that this will produce sufficient data to inform practice changes and improve palliative care for the future.
How often will you update the website with the most recent data?
We plan to update the website on a monthly basis but this will ultimately be dependent on the speed of which cases are reported.
Who is organizing this project?
This project is being led by Drs. Kirsten Wentlandt, Ebru Kaya, Jenny Lau and Camilla Zimmermann at University Health Network in Toronto, Ontario.
Are there any partnering organizations or collaborators?
Our official partner is the Canadian Virtual Hospice. We have several collaborators including Drs Peter Tanuseputro (University of Ottawa), Leonie Herx (Queen’s University), Bruno Gagnon (Université Laval), Lynn Gauthier (Université Laval), Pippa Hawley (university of British Columbia) and Konrad Fassbender (University of Alberta). We have several collaborating institutions- please see the full list on the Partners page (INTERNAL LINK to Partnerships Page).
What is the role of Canadian Virtual Hospice in this project?
Canadian Virtual Hospice has partnered with the project’s organizing team to promote the study, and conduct knowledge translation activities. Canadian Virtual Hospice does not play a role in data management or analysis. The University Health Network and the UHN study team are the data custodians and will provide the Canadian Virtual Hospice with regular reports for presentation.
If I have additional questions, whom should I contact?
Please direct questions to COVIDRegistry@virtualhospice.ca.