The National Palliative Care Registry™ is committed to protecting the privacy and security of all information entered to the Registry. As a user of the Registry, you consent to the collection and use of your information as described here.
Types of Information Collected
The Registry collects contact information for palliative care team members and their representatives such as name, title, mailing address, telephone number, fax number, and email address. All other information collected relates to palliative care program characteristics, operational structures and processes.
How Your Information is Transmitted and Stored
SSL (Secure Socket Layer) protocol is used for transferring data between your browser and our servers. All information collected in the Registry is stored on a dedicated server located in a secure data facility that is SAS 70 type II certified.
How Your Program Information Is Used
Your individual program’s data will only be available to you, in the form of summary longitudinal reports for your program and performance reports that compare your program with aggregate data of other programs in the Registry. CAPC and the NPCRC will report and publish on aggregate analyses of trends and variability in the U.S. palliative care program structures and processes. No individual programs will be identified.
Registering your program will create a public listing in the Provider Directory on getpalliativecare.org for patients and families which includes basic program contact information and the type of population served by the program (pediatric or adult).This is currently limited to hospital-based palliative care programs, but will be expanded to include community-based palliative care programs in the future.
How Your Contact Information Is Used
The Registry will use emails to notify users about Registry updates, products, services or upcoming events. Users who do not wish to receive notifications via email or regular mail can choose to opt out by contacting the Registry Helpdesk at email@example.com or 212-201-2689.