Looking for more information? Our FAQ section provides answers to commonly asked questions, tailored for patients, caregivers, researchers, and clinicians. If your question isn’t addressed here, please use our contact form to submit it.
Registry-Specific FAQS:
What is Pulmonary Fibrosis?
Pulmonary Fibrosis (PF) includes a group of over 200 interstitial lung diseases (ILDs) that lead to inflammation and scarring of the lungs. This damage progressively destroys healthy lung tissue, reducing the lungs’ ability to supply the body with adequate oxygen.
What is the Canadian Registry for Pulmonary Fibrosis (CARE-PF)?
What are the goals of CARE-PF?
How many patients has CARE-PF enrolled?
CARE-PF includes over 6,500 patients from across Canada and adds more than 1000 patients annually.
How many data collection sites does CARE-PF have?
CARE-PF has eight data collection sites across Canada, located in Vancouver, Calgary, Saskatoon, Hamilton, Toronto, and Montreal. Vancouver and Montreal each have two sites.
Who is part of the CARE-PF team?
The CARE-PF research team includes pulmonary fibrosis clinicians, clinical and basic science researchers, epidemiologists, biostatisticians, health services researchers, health economists, patients, and caregivers.
How can researchers get involved?
CARE-PF welcomes collaborative inquiries from research teams. To connect with us, please fill out our contact form. Our Steering Committee will review your request, and a team member will follow up with next steps.
Read our ‘Researcher-Specific FAQs’ for more information
How can patients and caregivers get involved?
There are two pathways through which you can get involved:
- Pathway 1: As a member of our Community Advisory Network (for patients and caregivers)
- Pathway 2: As a ‘research participant’ (only for patients)
What data does CARE-PF collect?
CARE-PF collects comprehensive data about the diagnosis, demographics, risk factors, treatments, and outcomes, as well as detailed clinical and patient-reported measures. This data helps drive impactful research and supports advancements in care for those living with pulmonary fibrosis.
How does the data collection process work?
Patients are introduced to CARE-PF during their clinic visit and informed about the registry. Once the patient consents to joining the registry (as a ‘research participant’) and provides consent, they fill out the data collection questionnaire. Follow-up is done via email or text, based on their preferences.
How does CARE-PF protect the privacy and security of collected data?
Data Storage and Security:
All data collected by CARE-PF is stored on a secure UBC server located at St. Paul’s Hospital. The database is safeguarded through robust security measures, including:
- Password Encryption: Access to the database requires the use of encrypted passwords.
- Dual-Factor Authentication: Additional security is ensured through dual-factor authentication for authorized users.
- Institutional Firewalls: The server is protected by institutional firewalls to prevent unauthorized access.
Access to Data:
Access to the database is strictly controlled and limited to authorized personnel. Approval from the Principal Investigator is required for any access to the database.
Data Anonymization:
Patient information is anonymized by assigning a unique study number to each participant. This number does not include any personal identifying information, ensuring participant confidentiality.
How is CARE-PF contributing to research that is directly relevant to the care of people living with pulmonary fibrosis?
As the largest comprehensive collection of Canadian patients with pulmonary fibrosis, CARE-PF provides a network for future clinical research and a robust platform for translational and basic science research that is unequalled in Canada and among the leaders globally. CARE-PF has supported over 40 publications on topics that are directly relevant to the care of people living with pulmonary fibrosis. These include many studies on the diagnosis, management, and outcomes of pulmonary fibrosis, which have been conducted with collaborators from around the world.
Who funds CARE-PF?
We are proudly funded by Boehringer Ingelheim and Canada’s Drug Agency.
How can I contact the CARE-PF team?
Patient/Caregiver-Specific FAQs:
How can patients and caregivers get involved?
There are two pathways through which you can get involved:
- Pathway 1: As a member of our Community Advisory Network (for patients and caregivers)
- Pathway 2: As a ‘research participant’ (only for patients)
What is the difference between becoming a Community Advisory Network (CAN) member versus a research participant?
Being a member of the CAN provides opportunities for becoming a “patient partner”, which is different from a “research participant”. As a patient partner, you will be provided opportunities to contribute to the research process and research‐related activities. Patient or research participants will provide the data (through completing surveys, lab tests, interviews, etc.) that researchers utilize to answer questions about pulmonary fibrosis. Please review this resource if you have any questions about the difference between a “patient partner” and a “patient participant”: https://porr.med.ubc.ca/what-is-por/
What are the benefits of joining CARE-PF as a CAN member?
CAN members will collaborate with a team of renowned researchers, healthcare professionals, and advocates to actively participate in research, contributing to improving the lives of those impacted by pulmonary fibrosis and progressing towards finding a cure. Members will also connect with others who share similar experiences, interests, and goals, creating a supportive network dedicated to advancing the goals of CARE-PF. If you are interested, we encourage you to visit the ‘Our Team’ page to learn more about the inspiring individuals already part of this journey.
Are there any risks associated with joining CARE-PF as a CAN member or patient participant?
There is a minimal risk of a data breach, a possibility inherent in any healthcare facility. This is transparently outlined in the Informed Consent Forms (ICFs). Beyond this, there are no physical or clinical risks to patients or caregivers associated with participation.
Will participating in CARE-PF affect my current treatment?
No, your participation in in CARE-PF will not impact the care you receive at any of our sites.
What data will be collected from me?
As a CARE-PF research participant, you will be asked to fill out a questionnaire that asks about your smoking history, shortness of breath during regular activities, quality of life, ability to perform daily activities, medical history, ILD history, and any additional new symptoms.
How will CARE-PF protect my data?
Data Storage and Security:
All data collected by CARE-PF is stored on a secure UBC server located at St. Paul’s Hospital. The database is safeguarded through robust security measures, including:
- Password Encryption: Access to the database requires the use of encrypted passwords.
- Dual-Factor Authentication: Additional security is ensured through dual-factor authentication for authorized users.
- Institutional Firewalls: The server is protected by institutional firewalls to prevent unauthorized access.
Access to Data:
Access to the database is strictly controlled and limited to authorized personnel. Approval from the Principal Investigator is required for any access to the database.
Data Anonymization:
Patient information is anonymized by assigning a unique study number to each participant. This number does not include any personal identifying information, ensuring participant confidentiality.
Will I need to visit specific clinics or data collection sites?
Currently, patients who have consented to the study are provided with a follow-up questionnaire during their clinic visit with their respirologist. Patients complete the questionnaire at that time and return it to the study team. In the future, with the implementation of an electronic process, patients will receive a link to the follow-up questionnaire via email or text when it is due, allowing for greater convenience and flexibility.
How will CARE-PF communicate with me about my participation?
Study coordinators can communicate with patients using their preferred contact method, such as email or text message. In the future, automatic reminders will be sent to patients for any incomplete questionnaires, with the option to opt out of receiving these reminders if desired.
Can I connect with other patients or patient support groups through CARE-PF?
The CAN offers a valuable opportunity to connect with patients and caregivers who have firsthand experience of living with or caring for someone with pulmonary fibrosis. However, please note that the CAN is not a support group. If you’re seeking support, we recommend visiting the Canadian Pulmonary Fibrosis Foundation’s website, where you’ll find a list of available support groups:
Who can I contact if I have any questions around my participation?
If you have any questions about your participation as a ‘patient partner’ or ‘research participant,’ please reach out to us via our contact form. A member of our team will respond to your inquiry within 2-3 business days.
How will CARE-PF keep me informed about the registry’s progress and its impact on research?
Our website is the best way to stay informed about the registry’s progress and upcoming events.
Are there any resources available to support me?
Researcher-Specific FAQs:
Who are the researchers involved with the CARE-PF team?
Our team includes several researchers who work collaboratively with other team members to advance the registry’s goals.
How can researchers and research teams participate in CARE-PF?
CARE-PF welcomes collaborative inquiries from researchers and research teams. To connect with us, please fill out our contact form. Our Steering Committee will review your request, and a team member will follow up with next steps. Here are some examples of inquiries that may be submitted through the contact form:
- Proposing a new CARE-PF data collection site
- Accessing CARE-PF data
- Requesting CARE-PF’s publication policy
How can I access CARE-PF data for my research?
Please submit your request via our contact form, clearly specifying the data you wish to access and all relevant ethics approvals or plans to obtain them. Our Steering Committee will review the request, and a team member will follow up with the next steps.
What types of data are available for research through CARE-PF?
The following data is available:
Diagnosis: PF diagnosis, date of diagnosis
Demographics: Age, sex, race
Residential address: Postal code, geocoding
Risk factors / Exposures: Smoking, medications, environmental, occupational
Comorbidities: Major comorbidities (patient-reported)
Patient-reported outcomes: Dyspnea, cough, quality of life
Treatments: Pulmonary fibrosis medications, oxygen, pulmonary rehabilitation
Anthropometric: Height, weight, body mass index
Lung function: Multiple measures of airflow and gas exchange, including FVC, FEV1, FEV1/FVC ratio, TLC, RV, DLCO
Functional capacity: 6-minute walk distance, baseline & exertional oxygen saturation
Laboratory: Basic and extended autoantibody panel
Imaging: Computed tomography pattern
Lung biopsy: Type of biopsy, biopsy pattern
Outcomes: Mortality, lung transplant, hospital admission
Are there costs associated with accessing data from the registry?
Costs associated with accessing data from the registry potentially include any applicable Research Ethics Boards (REB) fees, any expenses associated with collecting, exporting, and preparing requested datasets, and any necessary project management costs.