Frequently Asked Questions
Learn more about the Canadian Bronchiectasis registry.
About the Registry
What is the Canadian Bronchiectasis and NTM Research Registry?
The Canadian Bronchiectasis and NTM Research Registry is a comprehensive patient database designed to advance our understanding of non-cystic fibrosis (non-CF) bronchiectasis and Nontuberculous Mycobacteria (NTM) lung disease. By collecting detailed clinical data and quality of life information from patients across Canada, we aim to improve diagnosis, treatment, and outcomes for individuals living with these conditions.
Why was this registry created?
Bronchiectasis and NTM have historically received less research attention than other respiratory diseases. This registry was established to:
- Create a comprehensive database of Canadian patients with these conditions
- Enable research into disease patterns, progression, and treatment outcomes
- Facilitate the development of new therapies and clinical trials
- Connect patients with emerging treatment opportunities
- Contribute to global understanding of these conditions
Who is leading this research?
The registry is led by the University of Calgary in collaboration with Insmed Incorporated and Trudell Medical International. Our research team includes experienced respirologists and researchers dedicated to advancing bronchiectasis and NTM care.
Participation Eligibility
Who can participate in the registry?
You may be eligible to participate if you:
- Are 18 years of age or older
- Have been diagnosed with non-CF bronchiectasis and/or Nontuberculous Mycobacteria (NTM)
- Are able to provide informed consent
I have cystic fibrosis-related bronchiectasis. Can I still participate?
This registry specifically focuses on non-CF bronchiectasis. Individuals with cystic fibrosis are not eligible for this particular study.
Do I need to live in Calgary to participate?
No. While the registry is based at the University of Calgary, we are actively expanding to include participants from major cities across Canada. Contact us to learn about participation options in your area.
I was recently diagnosed. Is it too soon to join?
No. Patients at all stages of their disease journey are welcome to participate. Capturing data from early diagnosis through long-term management helps researchers understand the full spectrum of these conditions.
What Participation Involves
What will I need to do if I join the registry?
Participation typically involves:
- Providing informed consent
- Sharing your medical history and diagnosis information
- Completing quality of life questionnaires
- Allowing researchers to collect data from your medical records (with your permission)
- Periodic updates about your health status
Most of this information can be collected during your regular clinic visits, minimizing additional time commitment.
How much time will participation require?
Initial enrollment may take 30-60 minutes to complete consent forms and baseline questionnaires. Follow-up data collection is typically incorporated into your regular medical appointments, requiring minimal additional time.
Will I need to take any medications or undergo additional tests?
No. This is an observational registry, not a treatment study. We simply collect information about your existing diagnosis, treatments, and outcomes. You will not be asked to take any medications or undergo procedures solely for registry purposes.
How long will I be in the registry?
The registry is designed to follow participants long-term (through 2050) to understand disease progression over time. However, participation is voluntary, and you may withdraw at any time without affecting your medical care.
Privacy & Data Security
How will my personal information be protected?
We take data privacy very seriously. Your information is:
- Stored securely with restricted access
- De-identified for research purposes (your name is replaced with a code number)
- Protected according to Canadian privacy laws and research ethics standards
- Only accessible to approved research team members
Who will have access to my information?
Only authorized members of the research team will have access to your identifiable information. When data is shared for research purposes, it is de-identified to protect your privacy.
Will my participation be confidential?
Yes. Your participation in the registry is confidential. We will not disclose your involvement to anyone outside the research team without your permission.
Research & Clinical Trials
How will my data be used?
Your data will be used to:
- Study disease patterns and progression
- Evaluate treatment effectiveness
- Identify factors that influence outcomes
- Support the development of new therapies
- Enable clinical trial planning and recruitment
- Contribute to published research that advances the field
Will I be contacted about clinical trials?
One benefit of registry participation is potential access to clinical trial opportunities. If a clinical trial becomes available for which you might be eligible, we may contact you with information. Participation in any trial is always voluntary and separate from the registry.
Are there currently any clinical trials available?
The registry is working with pharmaceutical partners on multiple clinical trials, including Phase 2 and Phase 3 studies. Active opportunities vary over time. Registry participants may be contacted when appropriate trials become available.
Will I receive results from research studies?
We are committed to sharing findings with our registry participants. When research results are published, we will provide summaries through our website and participant communications.
Benefits & Costs
What are the benefits of participating?
Benefits include:
- Contributing to research that may improve future treatments
- Potential early access to clinical trial opportunities
- Helping advance understanding of bronchiectasis and NTM
- Supporting the development of the first FDA-approved therapies for these conditions
- Connecting with a community of patients and researchers dedicated to these diseases
Will I be paid for participating?
This is a volunteer registry, and participants are not compensated. However, your contribution is invaluable to advancing bronchiectasis and NTM research.
Will participation cost me anything?
No. There is no cost to participate in the registry. All registry-related activities are provided at no charge to participants.
Will my insurance cover participation?
Since this is an observational registry that doesn’t require additional tests or treatments, insurance coverage is not needed for registry participation. Any medical care you receive will be billed through your regular healthcare coverage as it normally would be.
Enrollment Process
How do I join the registry?
To join the registry:
- Contact our research team using the information provided on our website
- Speak with a research coordinator who will answer your questions
- Review and sign consent forms
- Complete initial questionnaires and data collection
You can also ask your respirologist or pulmonologist about referring you to the registry.
Can my doctor refer me to the registry?
Yes! Healthcare providers can refer eligible patients directly to the registry. We provide physicians with referral information and patient resources to facilitate the process.
What if I have more questions before deciding?
We encourage you to ask questions! Contact our research team, and we’ll be happy to discuss the registry with you, address your concerns, and help you make an informed decision about participation.
For Healthcare Providers
How can I refer a patient to the registry?
Healthcare providers can refer patients by contacting our research team directly. We provide referral forms and patient information materials to support the referral process. Contact information is available in the “Our Team” section of this website.
What eligibility criteria should I use when considering referrals?
Refer patients who are:
- 18 years or older
- Diagnosed with non-CF bronchiectasis and/or NTM
- Able to provide informed consent
- Willing to participate in long-term follow-up
Will I receive updates about my referred patients?
With patient consent, we can provide referring physicians with updates about their patients’ participation in the registry and any relevant research findings.
For Researchers & Pharmaceutical Partners
How can my organization collaborate with the registry?
We welcome collaborations with academic researchers and pharmaceutical partners. Please contact our research leadership through the information provided on our website to discuss partnership opportunities.
How can I access registry data for research?
Researchers interested in accessing de-identified registry data should submit a formal data request outlining their proposed research. All requests are reviewed by our research team and must comply with ethics and privacy requirements.
What is the process for proposing a clinical trial through the registry?
Pharmaceutical companies and research organizations interested in clinical trial collaboration should contact our principal investigators to discuss trial design, patient eligibility, and recruitment processes.
Where is the registry located?
University of Calgary
Calgary, Alberta T2N 4N1
Canada
Have a question not answered here? Contact our research team, and we’ll be happy to help.
Study ID: NCT06144996
ClinicalTrials.gov: https://clinicaltrials.gov/study/NCT06144996