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 programs, such as program name, mailing address, telephone number, and website. The Registry also collects information on individuals, such as name, title, credentials, telephone number, and email address. All other information collected through the Registry’s surveys relate to palliative care program characteristics, operational structures and processes of care delivery. All data is annual and aggregate. No patient-level data is collected.
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 reports for your program and performance reports that compare your program with aggregate data of other programs in the Registry. You will not know what specific programs your program is being compared to and vice versa. CAPC and the NPCRC will publicly 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 in those publications.
Participating programs have the option of being publicly listed in the Provider Directory on getpalliativecare.org for patients, families, and other clinicians. The directory listing includes basic program contact information, sites of care and the type of population served by the program (pediatric, young adult, and/or adult).The Provider Directory includes all sites of care across the continuum, including hospitals, office/clinic locations, long-term care facilities, and counties served by home-based palliative care programs. Programs can opt-out of being listed at any time.
How Your Contact Information Is Used
The Registry will use emails to notify participants about updates, products, services, opportunities, 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 at firstname.lastname@example.org or 212-201-2689.