Patients and Caregivers
- How to get involved
- A quote from a participant and/or a CAN member
- Patient partners and caregivers:
- About CAN
- Link to CAN member bios ‘Meet our advisory network members’
- Easy steps on how to join -> add a ‘Join’ button.
- Patient Participants: Add information on current registry participants, eligibility criteria and how to join -> add a ‘Join’ button
- Link to ‘Privacy Policy’
- patient-specific FAQs and Resources page
- Add a link to the data collection sites in case someone is wondering which one is the closest to them. Provide site-specific contacts (is an interactive map possible?)
Get Involved
Are you looking to get involved with CARE-PF?
Learn how you can join our community:
Pathway 1: As a ‘CAN’ member
(For patients and caregivers)
CARE-PF values meaningful patient engagement and is guided by our Community Advisory Network (CAN) — a network of patients and caregivers who help us set our priority areas, advise on data collection and consent processes, and provide guidance on strengthening patient and caregiver engagement and retention in the registry. By integrating their insights and lived experiences, CARE-PF ensures the registry remains patient-centered and responsive to the needs of individuals impacted by pulmonary fibrosis.
Pathway 2: As a ‘research participant’
(For patients only)
This pathway allows patients and caregivers to join through their healthcare providers at participating sites. When patients receive care at one of our partner sites, their healthcare team may introduce them to CARE-PF. If they express interest in participating, the team will guide them through the participation process, including:
- Sharing detailed information about the registry’s goals and potential benefits.
- Providing the necessary consent forms and answering any questions.
- Collecting relevant clinical information to support the registry’s mission of advancing pulmonary fibrosis research.