Strengthening Collaboration Across Canada: Q&A with Humaira Ahmed, RareKids-CAN Clinical Trial Navigator

RareKids-CAN’s Clinical Trial Navigator network supports pediatric rare disease clinical trial readiness across Canada by helping connect institutions, investigators, and research teams through a coordinated national network.

Clinical Trial Navigators help facilitate collaboration, improve study start-up processes, and strengthen access to clinical trials for children and families affected by rare disease. As part of RareKids-CAN’s four-part Clinical Trials Day Q&A series, we spoke with Humaira Ahmed, Research Coordinator and Clinical Trial Navigator at McMaster Children’s Hospital.

RareKids-CAN: Can you describe your role alongside your work as a Clinical Trial Navigator at your institution?

Humaira Ahmed: I work in the Department of Pediatrics at McMaster University, supporting pediatric clinical trials in infectious diseases. Along with my role as a Research Coordinator, I am also serving as a Clinical Trial Navigator for RareKids-CAN at McMaster Children’s Hospital, where I support rare disease research and help facilitate access to clinical trials for children and their families.

“Clinical Trial Navigators help break down silos, promote consistent and high-quality trial practices, and reduce administrative burden on investigators. By improving coordination and site readiness, they also expand access to clinical trials for patients with rare diseases.”

RKC: What is a Clinical Trial Navigator, and why is this important?

HA: A Clinical Trial Navigator (CTN) is a RareKids-CAN network member embedded within institutions to support and connect rare disease clinical research efforts. They link investigators to the network and provide support throughout the Pediatric Rare Disease Clinical Trials (PRDCTs) lifecycle. CTNs help break down silos, promote consistent and high-quality trial practices, and reduce administrative burden on investigators. By improving coordination and site readiness, they also expand access to clinical trials for patients with rare diseases.

RKC: What drew you to working in pediatric rare disease clinical trials?

HA: My motivation comes from many places. With a medical background, I’ve always been drawn to clinical research. That interest deepened even further when one of my close relatives was diagnosed with a rare disease. Experiencing how vital research is for treatment opportunities strengthened my commitment to this field.

RKC: Clinical Trial Navigators are often described as the “boots on the ground” of RareKids-CAN. What does that look like in practice at your institution?

HA: At our institution, being the “boots on the ground” for RareKids-CAN means actively promoting awareness of the network and ensuring researchers are connected to its opportunities, resources, and supports.

A key part of my role is identifying researchers whose work aligns with RareKids-CAN priorities and connecting them with appropriate network trials, collaborators, and working groups. I serve as a local point of contact for inquiries related to network participation, helping investigators navigate processes and reduce barriers to involvement.

In addition, I regularly share training and professional development opportunities offered through RareKids-CAN, including workshops, webinars, and educational sessions.

RKC: How does being part of a national network improve access to or quality of clinical trials for rare disease patients?

HA: Patient access is significantly enhanced through participation in a national network by reducing many of the traditional barriers to clinical trial enrollment for rare disease populations. These networks broaden awareness of available trials by linking clinicians, researchers, and patient advocacy groups, ensuring that eligible patients are identified earlier and more consistently.

“By supporting multi-site participation, national networks allow patients to enroll closer to home rather than traveling long distances to a single specialized center.”

By supporting multi-site participation, national networks allow patients to enroll closer to home rather than traveling long distances to a single specialized center. This is an important consideration given the geographic dispersion and limited mobility often seen in rare disease communities.

Centralized screening and referral processes further simplify enrollment, while shared infrastructure enables the use of remote visits, telemedicine, and local testing, all of which reduce patient burden. Together, these approaches make trials more inclusive, equitable, and feasible for patients who might otherwise be unable to participate.

RKC: What challenges are unique to pediatric rare disease clinical trials?

HA: Pediatric rare disease clinical trials face several unique challenges. The patient population is very small and often geographically dispersed, which makes recruitment difficult and slows timelines. There are also relatively few pediatric rare disease trials available in Canada, limiting access for families and investigators. As a result, studies often take longer to launch and complete, requiring strong coordination, collaboration, and network support to be successful.

Pediatric rare disease clinical trials face several regulatory hurdles that can slow progress. Ethics and regulatory approvals are often more complex because studies involve children and they, therefore, require additional safeguards, parental consent, and sometimes assent from the child.

“Pediatric rare disease clinical trials face several regulatory hurdles that can slow progress.”

Many rare disease trials are multi-site or international, which means navigating different regulatory requirements, timelines, and interpretations across institutions and jurisdictions.

There can also be challenges related to trial design, such as small sample sizes that don’t always fit traditional regulatory expectations, as well as limitations around available endpoints or natural history data.

Together, these factors can make approvals take longer and increase the administrative burden on study teams.

RKC: What would you want people outside the research world to better understand about pediatric rare disease clinical trials?

HA: That children with rare diseases and their families face significant challenges, including long delays to diagnosis, limited treatment options, and few opportunities to participate in clinical trials. Because these conditions affect small and often geographically dispersed populations, research is frequently fragmented, under-resourced, and difficult to access.

“Because these conditions affect small and often geographically dispersed populations, research is frequently fragmented, under-resourced, and difficult to access.”

Expanding and better coordinating pediatric clinical trials is essential, not only to generate high-quality evidence, but also to improve care and create meaningful new possibilities for children and their families.

RKC: What excites you most about the future of rare disease clinical trials?

HA: What excites me most about the future of rare disease clinical trials is the possibility of seeing more trials developed and run in Canada.

Increasing the number of rare disease trials would make a significant difference for the rare disease community by improving access to studies and reducing the need for families to look outside the country.

The potential is already here. Canada has strong expertise, motivated investigators, and growing resources; it’s exciting to see how these can come together to create real impact for patients and families.