Palliative Care and Coronavirus Reporting Registry

Thank you for visiting PCQC's COVID-19 Case Report webpage. The COVID-19 case report was open from April 6, 2020- April 6, 2021. 

If you previously contributed data, we thank you for your submissions. PCQC is working to summarize learnings in a journal article for the field. 

The PCQC Registry is open for data submission. COVID-19 has been added as an optional data element in both the Annual Program Survey and the Clinical Data Capture under questions regarding primary diagnosis (sub answer under “infectious”). 

If you have case report data that you would like to submit after April 6, 2021, please contact PCQC at info@palliativecare.org. Please reach out to PCQC with any concerns or questions. 

PCQC–COVID19 Case Report Background Information

In the wake of the COVID-19 crisis, there has been a tremendous amount of uncertainty facing clinicians and administrators throughout our field. In response, the PCQC developed a short case report form to collate experiences of palliative care clinicians in caring for COVID-19 positive, PUI (Person Under Investigation), and recovered patients. These experiences will be shared with the palliative care community to foster clarity in the field. The case report was for both adult and pediatric palliative care.

With the collaboration of our entire palliative care community, we are defining the impact of COVID-19 on patients within palliative care, and how COVID-19 (suspected and confirmed) impacts palliative care.  

Key points

1. The PCQC – COVID19 Registry is an international effort—we are counting on robust participation and collaboration.
2. Participation is free and open to all palliative care programs across the continuum of care.
3. We will provide regularly updated summary information about the reported cases, so the entire palliative care community has access to this information in a timely manner.
4. The registry contains only de-identified data, per HIPAA Safe Harbor De-Identification standards. The registry does not contain any patient or institutional identifiers.
5. The storage and analysis of de-identified data do not constitute human subjects research as defined under federal regulations [45 CFR 46.102 and 21 CFR 56.102] and does not require IRB approval. Please check with your local IRB regarding use at your local institution.

We invited contribution to this voluntary reporting system between April 6, 2020- April 6, 2021. Through broad-scale participation and collaboration, we can answer very pressing questions for our palliative care patients and their caregivers.

Data Collection Forms

View a pdf of the PCQC COVID-19 Case Report for community-based and hospital-based palliative care.

We also allowed programs to submit data using an Excel template instead of the online survey.

If you have any questions, please reach out to info@palliativequality.org 

Sincerely,

The Palliative Care Quality Collaborative