Research Recruitment and Data Capture for a COVID-19 Research Study: Strategies and Considerations for the Future

Abstract

The COVID-19 pandemic, caused by SARS-CoV-2, highlighted the need for rapid, large-scale research initiatives to better understand the genomic, clinical, and epidemiological factors underlying disease susceptibility and diverse health outcomes. Our study leveraged federally-funded COVID-19 research programs which sequenced SARS-CoV-2 (VirusSeq) and human (HostSeq) genomes to generate an integrated dataset linking viral and host genomic data with clinical and epidemiological information. This study focused on overcoming challenges in participant recruitment and sample collection during the pandemic, particularly within the context of stringent public health measures. We aimed to ensure the inclusion of individuals from rural and remote regions of BC, who are often underrepresented in national research programs. To facilitate this, we utilized the British Columbia Centre for Disease Control’s (BC CDC) Consent to Contact Registry (CCRD) to recruit individuals who had tested positive for SARS-CoV-2 and had agreed to be contacted for research purposes. Recruitment was conducted through phone calls and emails, and participants provided either blood or saliva samples for genomic analysis. Participant comments shared during recruitment were reviewed descriptively to identify common motivations and concerns. Participants could mail back kits allowing those from remote communities to participate. Despite challenges, such as skepticism about remote data collection, we successfully enrolled 793 participants. We used a descriptive mixed methods approach that combined quantitative recruitment, participation and geographic metrics with a narrative summary of participant comments, integrating these data to explain participation patterns, motivations, concerns and barriers in the context of remote, registry-based recruitment. Our experiences underscore the importance of agile and inclusive research approaches during public health emergencies. Key strategies, such as leveraging existing public health registries, virtual consent processes and remote sample collection, can facilitate the recruitment of geographically diverse populations and should be considered in future large-scale genomic research initiatives.

Introduction

First identified in December 2019, COVID-19 (Coronavirus Disease 2019) caused by the SARS-CoV-2 virus, quickly progressed from a localized disease outbreak to a global pandemic and public health emergency (Zhu et al., 2020). The pandemic wreaked havoc on global healthcare systems, world economy and all aspects of human life. As of Oct. 5, 2024, there have been over 776 million confirmed cases and over 7.0 million confirmed deaths worldwide (Nicola et al., 2020; World Health Organization, 2024). COVID-19 related research became a global priority and leading experts from national and international research groups came together to assess the rapidly emerging and evolving knowledge, identify research gaps and accelerate research needed for effective timely management of the existing pandemic as well as future preparedness.

Collection and integration of large-scale multidisciplinary data, particularly genomic, clinical and epidemiologic information, was identified as a key priority area for informing public health strategies related to management, treatment, prevention and vaccination. Like other infectious diseases, COVID-19 results from a complex interaction between the pathogen (SARS-CoV-2), the host (human) and the environment (e.g. lifestyle factors) (Rahimi Pordanjani et al., 2021). The ability to link viral and host genomic factors to the highly variable clinical manifestations is crucial for understanding the ‘infectious disease triangle’. In Canada, a national cross agency network, Canadian COVID-19 Genomics Network (CanCOGeN) was established to inform Canada’s genomic response to the pandemic through two key distinct projects: i) VirusSeq for sequencing 150,000 SARS-CoV-2 genomes; and ii) HostSeq for sequencing 10,000 host genomes of individuals diagnosed with COVID-19. Building on these federal initiatives and public health infrastructure, our research project was designed to study the genomic determinants of COVID-19, their role in disease susceptibility and variable health outcomes. Towards this end, we aimed to generate an integrated dataset with linked genomic (VirusSeq & HostSeq), clinical and epidemiological data. Global efforts, including the COVID Human Genetic Effort, further emphasized the value of large-scale, harmonized genomic resources to study susceptibility and severity (Casanova et al., 2020).

Successful execution of such large-scale genomic and epidemiologic studies depends heavily on effective recruitment and data capture strategies. Prior research has highlighted persistent challenges in enrolling participants from rural, remote, and otherwise underrepresented populations due to geographic, socioeconomic, and cultural barriers (Rebbeck et al., 2022). Digital tools, including electronic consent, virtual communication and remote enrollment have been shown to enhance accessibility and engagement amongst groups historically excluded from biomedical research, such as low-income participants, individuals in remote and rural communities, and older adults (Khairat et al., 2018; Skelton et al., 2020). Flexible, participant-centered approaches, including home-based sample collection, further improves participation and helps generate more geographically and ethnically diverse datasets (Aatresh et al., 2021). Additionally, sustained engagement relies on transparent communication and culturally responsive recruitment practices, which are particularly important for populations with historic mistrust or limited previous participation in research (Bekteshi et al., 2024; Brijnath et al., 2024; Dawson et al., 2025). These findings informed the design of our study, guiding the development of flexible recruitment and data collection strategies that could accommodate public health restrictions while ensuring equitable inclusion of participants from rural and remote communities in British Columbia.

The urgency of the pandemic necessitated a rapid response from funders, researchers, regulators and policy makers, expediting the design and launch of research studies. However, implementation of crucial project activities such as participant recruitment, sample and data collection in the midst of a global pandemic posed a significant bottleneck to rapid uptake. Even in the best scenarios, effective and efficient participant recruitment is a major challenge, and failure can lead to underpowered outcomes and delays with significant ramifications. Stringent public health measures that were in place to mitigate the spread of the virus were extremely disruptive to research activities. These measures restricted in-person contact, contributed to suspension or modification of traditional recruitment methods in many settings and accelerated a shift toward remote and hybrid research models reported elsewhere (McDermott et al., 2021). Social distancing, travel restrictions and work from home mandates - absolutely imperative for protecting the vulnerable - created challenges for research recruitment activities that are typically done face-to-face. A key goal of our study was to ensure the inclusion of individuals from rural and remote BC communities, who are often underrepresented in research, even outside the context of a public health emergency. We prioritized the development of flexible, accessible recruitment and data collection strategies that could overcome these barriers.

In this article, we describe the COVID-19 Genomic Determinants Study as a descriptive mixed methods study embedded within VirusSeq and HostSeq, focusing on recruitment strategies and data capture. We outline our registry-based and remote recruitment approaches, present quantitative outcomes, summarize participant feedback and highlight lessons that may inform future large-scale genomic and epidemiologic studies that aim to include geographically and demographically diverse populations.

Methods

Study Design

We conducted a descriptive mixed methods study. Quantitative data included the number of individuals contacted, verbally consented, providing written consent and submitting biological samples, preferred and completed sample types, timelines from invitation to sample receipt and geographic distribution of participants. Qualitative data consisted of free-text comments from participants captured in recruitment logs, staff notes, phone call summaries and email correspondence. These comments were reviewed to identify recurring motivations, concerns and barriers from participants. We employed an inductive narrative synthesis approach informed by principles of descriptive qualitative research. Participant comments were extracted from phone logs and email correspondence and compiled into a centralized Microsoft Excel spreadsheet for data management. One research team member conducted an initial iterative review of all comments to identify recurring patterns and salient themes. These preliminary interpretations were then discussed with a second team member to enhance interpretive rigor and ensure consistency with the underlying data. The themes were generated inductively through repeated reading and discussion rather than formal coding, consistent with the exploratory and contextual aims of the study. Given the descriptive nature of the analysis, qualitative software was not used. This approach does not constitute formal thematic analysis but was intended to provide contextual insight alongside quantitative recruitment metrics. Quantitative and qualitative data were collected over the same recruitment period and integrated at the interpretation stage, where participant feedback was used to contextualize observed recruitment patterns, response rates and sample return.

Study Approval

The study was approved by the University of British Columbia Research Ethics Board (REB) under the protocol number H21-0054. Written informed consent was obtained from all study participants for research participation, collection of biological samples (blood or saliva), whole genome sequencing, collection of existing health information data (including viral sequencing data as well as clinical and administrative health data) as well as storage, future use and sharing of research data in accordance with the core consent elements outlined by HostSeq (Longstaff et al., 2022; Yoo et al., 2023).

Identification of Potential Study Participants

We partnered with the Consent to Contact Registry Database (CCRD) developed at the British Columbia Centre for Disease Control (BC CDC) to identify eligible individuals and access their basic contact and demographic information. The CCRD is a cloud-based registry database that contains information of people who have previously tested positive for COVID-19 and have provided consent to be contacted about related research opportunities. In order to be eligible, individuals had to be BC residents with a documented SARS-CoV-2 infection; have their viral genome sequenced via the VirusSeq program at the BC CDC Public Health Laboratory; and have provided explicit consent to be contacted for research opportunities. The CCRD served as the primary recruitment sampling frame and was accessed using standardized procedures to ensure the accuracy and consistency of participant lists.

Contacting Potential Study Participants

After obtaining the basic contact and demographic information from the CCRD, eligible individuals and/or their guardians were first contacted by one of two methods - email or phone call. Phone-based recruitment followed a standardized call protocol (summarized in Appendix A), which included an introductory script explaining the study purpose, verification of participant identity and eligibility, responses to frequently asked questions, and documentation procedures for recording participant responses and concerns. The research staff received training on the protocol prior to initiating recruitment calls. Each initial contact message (via email/phone) included language about: how and why we had access to their contact information, purpose of the research study, invitation to consider participation and an assertion that participation was voluntary. For individuals directly contacted by email, a copy of the consent form was attached to the invitation message and individuals were advised that a study team member will reach out by phone/email in the coming weeks to discuss the contents of the consent form. If they wished to participate in the study, the individuals were asked to sign the consent form only after they were given an opportunity to speak with a study team member. If eligible individuals did not respond after initial contact, they were contacted up to two more times with the second contact matching the method of the first and the third contact switching to the other contact method if available. This structured, multi-step recruitment strategy was designed to ensure consistent follow-up while avoiding coercive or excessive contact.

Participant Enrolment

After being provided sufficient time for review and an opportunity to speak with a study team member, eligible individuals who wished to participate in the study were requested to enroll in the study. This involved having those over 18 sign the consent form for their participation themselves or by their appointed guardians where appropriate. Those under 7 had their parent or guardian sign consent for participation on their behalf. Anyone between 7 and 18 signed an assent form to participate in the study and their parent or guardian signed an additional consent form as well. Those under 18 were able to sign a consent form for themselves if they displayed sufficient competence in understanding the details of what participation in the study entails. A successful enrolment meant the participants/elected representatives confirmed their understanding of the study and agreed to be a part of it by signing the consent form. This enrolment process was facilitated by the study team members via mail (no cost incurred to the participant), email, or by providing access to the RedCap e-consent platform. A copy of the signed consent form was also provided to the study participants/representatives for their records.

Sample Collection

Enrolled study participants were given an option for providing either a blood (4ml) or saliva sample. Those who wished to provide a blood sample were given a LifeLabs requisition form (by email or mail) so they could visit a LifeLabs location convenient to them. Blood samples were collected and immediately shipped to our research laboratory at ambient room temperature. For participants that were unable to provide a blood sample or chose to provide a saliva sample, Oragene saliva kits (OG-500) were mailed to the participants along with a return mail envelope. Key terms used in this study are defined in Table 1.

Table 1.

Glossary of Key Terms

Term	Definition
Oragene (OG-500) Saliva Kit	A self-collection device manufactured by DNA Genotek that allows participants to provide a saliva sample at home. The kit includes a collection tube with a stabilizing solution that preserves DNA at room temperature for transport and long-term storage, enabling remote sample collection without the need for clinical facilities.
HostSeq	A national initiative under the Canadian COVID-19 Genomics Network (CanCOGeN) to sequence the genomes of 10,000 Canadians diagnosed with COVID-19 to identify the genetic factors associated with disease susceptibility and outcomes.
HostSeq Case Report Form (CRF)	A standardized data collection instrument developed by the Canadian CanCOGeN HostSeq project to capture clinical, demographic and epidemiological information from participants enrolled in COVID-19 genomic studies. The CRF defines the scope of variables extracted from administrative health records and participant surveys to enable data harmonization across participating sites.
VirusSeq	A national initiative under CanCOGeN to sequence 150,000 SARS-CoV-2 viral genomes from Canadians to track viral evolution, variants and transmission patterns.
CCRD (Consent to Contact Registry Database)	A cloud-based registry developed at the British Columbia Centre for Disease Control (BC CDC) containing information on individuals who have tested positive for COVID-19 and provided consent to be contacted for research opportunities.

Data Collection

Enrolled participants had provided explicit consent for extraction and storage of their health information data that was collected at other sites or registries such as the CCRD or the VirusSeq program as well as any other administrative, clinical and epidemiological data collected by provincial government and health authorities. Data collection was in accordance with the HostSeq Case Report Form, which determined the scope of which information was collected. Data collection required coordination from multiple registries and agencies, including pursuing separate data-sharing agreements with each organization, navigating ethical approvals, and addressing logistical challenges related to transferring, standardizing and integrating data across multiple systems. In addition to genomic and administrative data, we documented participant comments from both phone calls and email communications during recruitment to understand common motivations, concerns and barriers. The comments were reviewed descriptively rather than through formal qualitative analysis. The themes were generated through narrative synthesis of staff notes, recruitment logs and participant messages, consistent with a descriptive mixed-methods design. These themes are reported alongside quantitative recruitment metrics in the participant voice and experience section to contextualize participation patterns within the mixed methods design.

Results

Study Workflow

The study workflow is summarized in Figure 1 illustrating the progression from registry access through participant contact, consent, sample collection and data linkage.

Figure 1.

The study workflow

Recruitment Statistics and Study Participant Demographics

The project commenced in March 2021 and ended in June 2022. The first three months focused on obtaining REB approval, organizing study workflows and training research staff to support recruitment and sample handling. As a result, recruitment for the study did not commence until May 2021, leaving only one year to recruit and collect specimens from participants. Throughout the year, the number of participants that provided verbal consent, signed the consent forms, and sent in processable biological samples were recorded, as illustrated in Figure 2. Notably, each successive month witnessed a consistent augmentation in the numbers of all categories recorded. In total, 1369 individuals verbally consented, 1053 individuals provided written consent, and 793 individuals sent a biological sample. The study experienced its most substantial surge in interest during the initial stages, particularly between the project’s inception through to September 2021. Subsequently, there was a temporary decline in study participation until April 2022, when another increase in interest in study participation was observed. These temporal fluctuations may reflect several factors, including the timing of pandemic waves in British Columbia, evolving public attitudes towards COVID-19 research as vaccination rollout progressed and potential research fatigue among individuals repeatedly contacted for COVID-19-related studies. A marked increase in study participation was observed in April 2022, coinciding with the Omicron wave and potentially reflecting renewed public interest in understanding COVID-19 outcomes. The study’s ability to swiftly adapt and navigate during the evolving circumstances of the pandemic underscores its efficiency and responsiveness with the challenging COVID-19 environment.

Figure 2.

Recruitment statistics and study participant demographics

Among the individuals listed in the CCRD, a total of 6875 distinct individuals were contacted throughout the study duration. The primary means of initial contact varied, with 74% (5061 unique individuals) reached via email and 26% (1814 unique individuals) contacted through phone calls. The yield of these methods differed. Of the 1053 enrolled participants who provided written consent, 612 (58%) had been contacted by email and 441 (42%) by phone. This corresponds to an enrolment proportion of approximately 12% among those initially emailed and 24% among those initially called.

Participant sample preferences were assessed at the time of contact, revealing that 51% (542 individuals) expressed a preference for providing a saliva sample, while 49% (511 individuals) indicated a preference for providing a blood sample. A comparison between participants’ sample preferences and the samples received at study completion demonstrated a higher proportion of saliva samples. Specifically, among the 793 samples received 55% (439 samples) were saliva samples, whereas 45% (354 samples) were blood samples.

Separate calculations were performed to determine the timeframe between sending out samples and receiving them. For blood samples, this number was obtained by calculating the amount of time it took to receive a blood sample after sending a blood requisition to LifeLabs. On average, it required 32.33 days (ranging from 3-265 days) to receive a blood sample from participants after submitting their requisitions to LifeLabs. In contrast, for the saliva samples, the number was obtained by calculating the amount of time between sending the saliva collection kit and receiving the saliva collection kit at the laboratory. On average, it took 26.20 days (ranging from 7-372 days) for the laboratory to receive the saliva collection kits.

Among participants who provided signed consent, the largest proportion were aged 31-60 years. Females were more represented than males in the 11-20, 21-30, 31-40, 41-50, 51-60 and 61-70 year categories, while the 0-10 and 71-80 year categories had a higher proportion of males. Overall, females accounted for 60% (629 individuals) and males for 40% (424 individuals) of the enrolled cohort, consistent with the distributions shown in Figure 2. The higher representation of females and working age adults in our cohort is consistent with patterns observed in other COVID-19 genomic and biobank studies (Bochud et al., 2017; Heidari et al., 2021; Jalbert et al., 2024; Small et al., 2023). Several factors may contribute to these patterns, including gendered-differences in health-seeking behavior, greater schedule flexibility amongst working-aged adults, or differential comfort with remote research modalities. The lower representation of adults over the age of 80 is notable given their elevated risk of severe COVID-19 outcomes. This pattern may be related to lower digital literacy or reduced comfort with electronic processes (Hepburn et al., 2025), suggesting a need for targeted engagement strategies in future studies.

Geographic Diversity of the Study’s Participants

Through a comprehensive approach that allowed recruitment to happen over the phone, the option of mailed or e-consent forms, and biological collection to occur locally or at the convenience of the participants’ home, we ensured the inclusion of a wide array of individuals. Participants who took part in the study were situated in diverse cities across BC when they contracted COVID-19. We achieved representation from major metropolitan areas as well as rural and remote communities. The geographical representation of participants based on postal code is illustrated in Figure 3 highlighting the various locations included in our study. The participants were categorized according to their respective health authorities utilizing their postal codes. The distribution among the different health regions revealed that 440 participants originated from the Vancouver Coastal Health region, 316 participants belonged to the Fraser Health region, 249 participants were affiliated with the Interior Health region, 26 participants belonged to the Island Health region and 13 participants were associated with the Northern Health region. We also included 9 participants in the study who had been present in BC at the time of their COVID-19 infection but subsequently returned to their permanent residences outside of the province at the time of recruitment. As a result, individuals from diverse locations across Canada such as Halifax, Toronto, Montreal, and Calgary were included.

Figure 3.

Geographic diversity of the study’s participants

Participant Voice and Experience

Participants had various responses to being contacted to participate in our COVID-19 research study. Common themes among those who chose to participate included a desire to contribute to ending the COVID-19 pandemic, improve the Canadian healthcare system and support research efforts. Some participants expressed empathy for the difficulty of recruitment during the pandemic and were motivated to contribute. For those who declined, commonly cited reasons included limited time, dissatisfaction with aspects of the pandemic response and discomfort around sharing genetic data or personal health information. We present these descriptive themes to complement the quantitative recruitment data and to illustrate how perceptions of trust, burden and data use may influence participation in remote, genomics-focused studies.

Discussion

The onset of the COVID-19 pandemic and its public health guidelines caused significant disruptions to health research, limiting traditional in-person methodologies. Consistent with reports from other clinical and observational studies, many in-person activities were modified or paused, and remote strategies were adopted to preserve both participant safety and research integrity (McDermott et al., 2021). In this context, our study implemented adaptations that enabled remote conduct while aligning with public health measures. Our findings offer several insights into participant demographics, motivations and the temporal dynamics of recruitment during a public health emergency.

The predominance of working-age adults (31-60) and females in our cohort aligns with patterns reported in other COVID-19 genomic and biobank studies, where women and middle-aged individuals demonstrate high rates of research volunteerism (Bochud et al., 2017; Heidari et al., 2021). The reasons for these patterns are likely multifactorial and may include differences in health-seeking behavior, availability for research participation or comfort with remote research modalities. The underrepresentation of adults over the age of 80 is notable given their elevated risk of severe COVID-19 outcomes and may reflect barriers such as lower digital literacy or reduced familiarity with electronic consent processes; this suggests a need for targeted engagement strategies in future studies. Participant motivations, such as altruism, the desire to contribute to the pandemic response, and support for scientific research are consistent with qualitative findings from other COVID-19 studies, where prosocial motivations and trust in research institutions emerged as key facilitators of participation (Jalbert et al., 2024; Small et al., 2023). Conversely, concerns about data privacy and genetic information sharing echo documented barriers to genomic research participation, particularly among populations with historical experiences of research exploitation or limited familiarity with biobanking (Aramoana & Koea, 2020; Ridgeway et al., 2013).

The temporal fluctuations in recruitment observed in our study merit further consideration. The initial surge in enrollment (May-September 2021) coincided with a period of heightened public awareness and concern about COVID-19, as well as widespread media attention to the importance of research participation. The subsequent decline (October 2021-March 2022) may reflect several converging factors: the rollout of COVID-19 vaccines, which shifted public focus from understanding the disease to preventing it, a degree of “pandemic fatigue” that reduced the willingness to engage in additional health-related activities, and competing demands from other COVID-19 research initiatives. The resurgence in April 2022 aligned with the Omicron wave, which may have renewed interest in understanding COVID-19 outcomes, particularly among individuals experiencing reinfection or breakthrough infections. These patterns underscore that recruitment dynamics in pandemic research are highly sensitive to the broader epidemiologic and social context, a finding consistent with reports from other COVID-19-related studies (Kaczynski et al., 2023). Future pandemic preparedness efforts should anticipate such fluctuations and build in adaptive recruitment strategies that can respond to shifting public engagement.

Operationally, our study adopted several adaptations to maintain recruitment while aligning with public health measures. One of the most critical developments was the adoption of an electronic consent process via REDCap, which allowed research staff to obtain informed consent remotely. Though time-intensive to establish, this system supported compliance with public health guidelines, reduced the need for in-person contact and minimized travel for participants in rural and remote communities in British Columbia, aligning with evidence that e-consent can help maintain recruitment and support accessibility when implemented thoughtfully (Almeida-Magana et al., 2022; Skelton et al., 2020).

To further facilitate remote participation, we established contracts with LifeLabs, allowing for sample collection at locations accessible to participants. Additionally, the ability to ship saliva collection kits directly to participants significantly expanded our reach to geographically isolated populations. These options lowered logistical barriers and extended our reach to geographically isolated populations, in keeping with work demonstrating the feasibility of at-home or decentralized sample collection for large scale studies (Aatresh et al., 2021).

A crucial aspect of our remote research model was establishing trust in the e-consent process. Our approach prioritized participant autonomy (Figure 4) by ensuring that consent was fully informed, voluntary, and clearly communicated. Initially skepticism, particularly among older participants and those less familiar with technology was addressed. However, through transparent communication and support, we were able to build confidence in the process, ultimately fostering greater engagement and confidence in the study. These experiences are consistent with qualitative findings that emphasize transparent communication, visible institutional accountability and control over participation as central to building trust in COVID-19 research recruitment and consent (Small et al., 2023).

Figure 4.

Patient voice and experience

Despite these successes, remote recruitment presented unique challenges. Recruitment was conducted primarily via phone calls and emails, with response rates of 25% and 10%, respectively. Many potential participants expressed skepticism about the legitimacy of the study when contacted remotely, fearing their personal data could be misused. Concerns regarding the ownership and distribution of genomic and clinical data were particularly prominent, with some individuals worried that their information could be accessed by insurance companies or used for non-research purposes. Addressing these concerns required consistent messaging and clear reference to ethics approvals, HostSeq core consent elements and data access safeguards (Longstaff et al., 2022; Yoo et al., 2023).

Beyond participant recruitment, the collection and integration of health information data posed additional challenges. While the HostSeq Case Report Form defined the scope of variables for extraction, obtaining the data required coordination with multiple registries and agencies, each with its own requirements, data-sharing agreements, and ethical approvals. Navigating these approvals and establishing secure data transfer pathways demanded considerable time and effort, particularly when integrating datasets collected for different purposes across provincial health authorities. These logistical and ethical complexities highlighted the importance of early planning, clear communication with data custodians, and flexible strategies to harmonize disparate datasets. Lessons learned from these experiences underscore that even with strong consent and robust protocols, large-scale data integration for genomic research involves extensive coordination and adaptability, particularly when aiming to include geographically and administratively diverse populations.

While recruitment posed challenges, it also presented significant opportunities. The remote nature of our study allowed us to engage participants from all regions of British Columbia, including rural and remote communities that typically have limited opportunities to participate in research. By extending our reach beyond urban centers, we were able to generate a dataset that better represents provincial COVID-19 statistics and outcomes. At the same time, reliance on digital contact and an opt-in registry may underrepresent individuals with limited internet access, individuals reluctant to answer unfamiliar phone calls due to spam or fraud concerns, and those who may be less engaged in attending to their own health needs, an important limitation shared with other registry-based recruitment efforts (Bekteshi et al., 2024; Dawson et al., 2025; Rebbeck et al., 2022).

Our partnerships were crucial in overcoming recruitment barriers. Collaboration with the British Columbia Centre for Disease Control’s Consent to Contact Registry (CCRD) was particularly effective in identifying individuals already interested in participating in research. Because the CCRD was built through community partnerships and stakeholder engagement, it provided a valuable pool of potential participants. The registry’s broad reach was instrumental in engaging underrepresented populations, particularly in rural and remote communities.

Additionally, we found that well-designed recruitment materials significantly influenced participation rates. Clear and concise recruitment emails and consent forms were crucial in helping individuals make informed decisions about participation. Reducing the effort required for participation further encouraged engagement. By implementing e-consent forms instead of in-person consent, leveraging existing data with participant consent, and providing at-home sample collection options, we streamlined participation. The availability of saliva collection kits was particularly beneficial for remote communities, as participants could provide samples from the convenience of their homes without incurring additional costs or travel burdens. Using e-consent and mailed saliva kits reduced the burden on participants, consistent with literature showing that reducing logistical barriers and using participant-centered design can support inclusion in remote research (Aatresh et al., 2021; Almeida-Magana et al., 2022; Skelton et al., 2020).

From an efficiency standpoint, while phone outreach resulted in a higher likelihood of participation, it was more time-consuming than email. Email communication allowed us to reach a larger number of potential participants quickly, making it a more scalable recruitment strategy.

Although the primary aim of our study is to elucidate the viral, host genetic, and environmental factors contributing to COVID-19 disease severity and susceptibility, our experience also provides broader insights into the feasibility and effectiveness of remote research methodologies. The study demonstrated how virtual recruitment and data collection can be successfully implemented while promoting inclusivity and accessibility for remote populations. As recruitment has now concluded, data analysis is underway. We anticipate that the findings will inform public health efforts in British Columbia and contribute to Canada’s broader response to COVID-19. All conclusions presented in this manuscript are based on observed recruitment metrics, demographic and geographic distributions and descriptively summarized participant feedback, and do not rely on genomic analyses.

Conclusion

There is growing recognition that changes to research workflows during the pandemic will shift the paradigm of biomedical and healthcare research especially towards the adoption of digital-health technologies. Our experience supports the feasibility of combining registry-based outreach, remote consent and flexible biospecimen collection to recruit geographically diverse participants for large scale genomic studies during public health emergencies. As these lessons remain fresh, now is the time to start translating the pandemic-era research process adaptability into more sustainable, scalable tools for successful health research in a post-COVID-19 world. This includes continuing to make research participation accessible for those that live in rural and remote communities, ensuring that advances in health care research are equitable, inclusive and representative of all populations. Future evaluations that compare participation, equity, cost and data quality across remote, hybrid and in-person models will be important to guide long term implementation.