PI Research and Innovation
Find out what’s happening in research and innovation for primary immunodeficiency (PI) and inborn errors of immunity (IEI).
What is a Clinical Trial Study?
Clinical trials are a type of controlled research study that uses randomized groups to test an intervention (typically medical or behavioural). Volunteer participants are divided into experimental and control groups and randomly assigned to receive a placebo or experimental treatment. Crucially, participants don’t know whether they receive the placebo or the experimental treatment.
By using a control group, researchers can test the effectiveness and side effects of a new treatment.
ImmUnity Canada members receive updates and opportunities to participate in research studies. Membership is free, so join today!
Current and Upcoming PI Clinical Trials
By participating in clinical trials, patients can be more involved in their own healthcare and, in some cases, gain access to new and experimental treatments before they become widely available. Participation in clinical trials is also a meaningful way to help others with a similar disease.
Choosing whether to participate in a clinical trial is a personal decision and should be discussed with your specialist care provider.
For a list of clinical studies currently recruiting and not yet recruiting in Canada and around the world, visit clinicaltrials.gov.
Research Studies and Publications
Medical and scientific advancements lead researchers to ask new questions and develop new answers for immune system disorders. Volunteering to participate in research can help advance understanding, treatment and outcomes for PI and IEI.
Many studies are publicly available in online databases, such as the ones listed below.
Study Recruitment Opportunities
Making visible the life stories of families of children who are immunocompromised during COVID-19
Families with children who have immunodeficiency are eligible to take part in a study from the College of Nursing, University of Manitoba. This national study looks at the lived experience of families with immunocompromised (IC) children during the pandemic. Your participation in this study will provide important insights into the experience of families with children who are immunocompromised throughout the current COVID-19 and future crises. Any family with an IC child under 18 anywhere in Canada is eligible to participate.
If you have questions or are interested in participating, please contact ingauge@umanitoba.ca or call 204-480-1051.
Liquid gold: Exploring the social landscape of expanding use of immune globulin in Canada
Canadian Blood Services is looking for immune globulin (Ig) recipients to participate in a research study. The study will document participants’ experiences with illness and treatment and investigate Ig recipients’ knowledge, perceptions and values related to the origins of Ig products.
If you have questions or want to participate in this research study, please contact Dr. Kelly Holloway, Ph.D., Canadian Blood Services’ Donation and Policy Studies.
email: kelly.holloway@blood.ca
tel: 437-238-1416
Advancement in Therapy and Treatment
Inhaled antibiotics have been used to treat Cystic Fibrosis patients for some time. It was thought that they might help some PI patients with bronchiectasis or chronic lung disease.
Read the study: The efficacy and safety of inhaled antibiotics for the treatment of bronchiectasis in adults: a systematic review and meta-analysis
A Phase I trial completed in 2019 in Europe showed promising results for an inhaled immune globulin. This inhaled Ig would not replace IVIG or SCIG but may help patients with chronic upper respiratory infections.
Read the study: Topical application of nebulized human IgG, IgA and IgAM in the lungs of rats and non-human primates
Genetic Therapy
- In current Phase III trials in Europe, Orchard Therapeutics is developing a gene therapy for ADA-SCID.
- In current Phase III trials in Europe, Orchard Therapeutics is developing gene therapy for Wiskott-Aldrich Syndrome (WAS).
- In Europe, Orchard Therapeutics is planning a clinical trial for X-linked Chronic granulomatous disease.
- Mustang Bio is doing a multi-centre gene therapy study (US/UK), entering Phase II for X-linked SCID.
Technology and Tools
- CSL Behring introduced the Pre-Filled Syringe in Canada in 2017 in the 10ml format. In 2020, they introduced PFS in 2ml, 5ml, and 20ml.
- CSL Behring is developing a “disk” to which patients adhere to the infusion site. A button would activate the infusion needle and immune globulin, starting the infusion.
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