Communications, engagement, and dissemination strategies for the HEALthy Brain and Child Development (HBCD) Study

Abstract

The HEALthy Brain and Child Development (HBCD) Study, a multi-site prospective longitudinal cohort study, will examine human brain, cognitive, behavioral, social, and emotional development beginning prenatally and planned through early childhood. Study success depends on the engagement and inclusion of diverse populations of pregnant participants and their children across the United States, including those at high and low risk for prenatal substance use. The Communications, Engagement, and Dissemination (CED) Committee is responsible for the development and implementation of a strategy to promote awareness about the study, encourage participation, and engage HBCD families, community partners, and collaborators. Initial work involved developing versatile recruitment and awareness materials with a consistent and inclusive message that reduces stigma and negative bias towards marginalized populations, including people with substance use and other mental health conditions. These efforts were shaped by an integrated product development workflow and early engagement with HBCD partners to address challenges. Ongoing work includes the expansion of HBCD outreach through newsletters and social media platforms with an emphasis on protecting participant privacy. Future activities will focus on disseminating scientific information through generation of infographics and webinars that will inform participants, families, and the public of discoveries generated from HBCD Study data.

1. Introduction

The HEALthy Brain and Child Development (HBCD) Study is a nationwide multi-site observational study that aims to answer fundamental questions about the impacts of prenatal exposures, including substance use, and early life experiences on developmental trajectories and child health outcomes (Nelson et al.,, Volkow et al.,). The success of the HBCD Study relies on the active engagement and participation of a diverse cohort of over 7000 pregnant participants across the United States, including those at both high and low risk for prenatal substance use. The success of HBCD also depends on engagement and collaboration from key partners, such as local community advisory boards (CABs), other community and public partners, national scientific and medical societies, and federal collaborators. To effectively engage with all 27 HBCD Study sites, participants, HBCD partners, the scientific community, and the general public, the Communications, Engagement, and Dissemination (CED) Committee was established within the HBCD Study Consortium. This committee draws on principles of health communication, social marketing, and community engagement (Grier and Bryant, 2005, Shawky et al., 2019) common to other large-scale research studies (Hoffman et al., 2018, Mancera et al., 2021, Sudlow et al., 2015) to centralize communication efforts and foster rapport, trust, and engagement across the Consortium and with current and future participants.

The CED Committee is charged with the development and implementation of strategies to communicate the scope and purpose of the research study to a diverse audience across the United States. The objectives are to encourage study participation, raise awareness about the study and its benefits, and generate ongoing engagement. Collaboration is a key component of effective communication strategies and developing impactful materials within the HBCD Study. The CED Committee works closely with individual study sites and their local CABs, HBCD Consortium Working Groups (WGs), study leadership, and federal partners, as well as other interested parties, to ensure a unified approach. Challenges such as maintaining a consistent national message while addressing site-specific needs, creating inclusive materials, and navigating a single Institutional Review Board (sIRB) are being addressed and overcome through lessons learned and active bidirectional feedback.

As the HBCD Study progresses and scientific data become available, the committee will shift toward community-informed dissemination of study findings. Building on the successful outreach and dissemination models of other neurodevelopmental cohorts, such as the Adolescent Brain Cognitive Development^SM Study, or ABCD Study® (Hoffman et al., 2018, Volkow et al., 2018), the CED Committee will share study progress and findings with the broader community through various multimodal communication platforms.

This report provides an overview of the CED organization and content development workflow, highlights the rationale and lessons learned from the materials developed thus far, and discusses plans for future outreach and dissemination activities that will harness the collaborative bidirectional process fundamental to the work of the committee. The organization and processes outlined in this report are of relevance to the research institutions involved in the HBCD Consortium as well as to the greater scientific community as a model, or template, for developing communication strategies in large multi-site research projects that require on-going participant and partner engagement.

2. Committee organization and integrative workflow

The CED Committee plays a crucial role in various aspects of outreach and engagement for the HBCD Study. CED members, including principal investigators, co-investigators, research assistants, research coordinators, study navigators, federal collaborators from the National Institutes of Health (NIH), and policy and communications experts, collaborate to develop content for outreach materials and identify communication channels to raise awareness. The composition of CED members is meant to ensure communication and collaboration across the 27 HBCD Study sites, HBCD Consortium WGs, study leadership, as well as federal partners in the development of participant- and public-facing materials. Members work across the HBCD Consortium to monitor site outreach and retention efforts, identify gaps in communication strategies, and propose solutions as needed. The committee meets bi-weekly and maintains regular offline communication to ensure timely and effective solutions. A subgroup specifically focused on social media communications and engagement was created and interfaces with the CED Committee regularly to ensure the cross-fostering of ideas to enhance multimodal communications (see Social Media Section 2.2 below).

CED efforts are also shaped by feedback from CABs through local site engagement. As in the ABCD Study®, engagement with communities helps to center the needs and expectations of those involved in the HBCD Study; CABs are a critical component of this process (Auchter et al., 2018, Hoffman et al., 2018). This practice is also employed by the Clinical and Translational Science Awards (CTSAs) funded through the National Center for Translating Sciences (NCATS; Matthews et al., 2018; Stewart et al., 2019). Within the HBCD Consortium, each study site has at least one CAB to provide community engaged feedback across many study activities, including communications materials. Although CAB members do not directly serve on the CED Committee, some CED members have a site-specific role within their CAB(s) and facilitate the review of draft materials and engage CAB members to identify gaps for the committee to address. The CED Committee has leveraged the expertise of the CABs in the early development of recruitment and awareness materials and incorporated the feedback they provided in the development of various additional materials.

2.1. Establishing the HBCD Study brand

One critical initial responsibility of the CED Committee was to create an HBCD Study brand including a graphic depicter, the study title and tagline, and a look and feel with a color palette for the materials. As the HBCD Study involves the collaboration of 27 research institutions across the country, each with their own local brand, it was important to create a unifying HBCD Study brand to ensure a cohesive public-facing presence. As the study branding was being developed, feedback from various communications experts, community members, NIH staff and leadership, and HBCD Consortium staff informed various aspects of the decision-making process. Consideration to align some aspects of the HBCD Study branding with that of the ABCD Study® and other trans-NIH initiatives with similar objectives and support mechanisms informed many of the final decisions on elements used within the HBCD Study branding. The name of the HBCD Study itself combines a simple four-letter acronym, akin to that of the ABCD Study®, and incorporates the use of the NIH HEAL Initiative® acronym in the spelling of HEALthy, as the NIH HEAL Initiative supports HBCD Study funding (Volkow et al., this issue). Furthermore, the color palette ultimately incorporated blue and green tones similar to the ABCD Study® with the magenta tone of the NIH HEAL Initiative palette. The graphic depicter (Fig. 1) with the tagline “Babies. Brains. Bright Futures” was designed to communicate the neurodevelopmental scope of the project and align with the tagline of the ABCD Study: Teen Brains. Today’s Science. Brighter Future®.

Fig. 1.

HBCD Study graphic depicter.

2.2. Social media

The HBCD Study utilizes social media for study recruitment, retention, community engagement, and outreach, and for sharing updates and information about the study. The purpose of both central and local site social media posts are multifold and include, among other topics: dissemination of information about study recruitment and how to become a participate, addressing frequently asked questions about participation in the HBCD Study, informing interested users about study procedures such as electroencephalography (EEG) and magnetic resonance imaging (MRI), sharing information about community events that may be of interest to prospective or current HBCD participants (e.g., library and park events for families, access to diapers and other resources for new parents, etc.), and sharing other content and information that may be of interest to people who are pregnant, parents, families, children, etc. (e.g., favorite children’s books, nutritional resources, information about exercise during pregnancy, parental self-care information, and more). Currently, HBCD's social media efforts are focused on Facebook and Instagram professional (business) accounts, although other social media platforms may be leveraged for future outreach. The same posts are made to Facebook and Instagram and content has not been specified as unique for either platform.

The HBCD Consortium Administrative Core (HCAC) runs centralized Facebook and Instagram accounts, and study sites are encouraged to develop their site-specific, locally run accounts. As of February 2024, 12 sites have established a Facebook and/or Instagram account managed by local site points of contact for the HBCD Study. The centralized account follows all the site-specific social media accounts and any other pages that align with the HBCD Study mission. All HBCD accounts are publicly accessible and can be followed by anyone. In addition, sites may provide current HBCD participants, prospective participants, CAB members, and other partners with links and/or QR codes on CED-created materials (informational flyers, pamphlets and forms shared during the consent process, etc.) to HBCD social media accounts on Facebook and Instagram, such that interested parties have the option of following the accounts for study information.

To align with NIH guidance, all study profiles have a statement indicating that they are “A study supported by the National Institutes of Health.” Social media policies surrounding endorsements, liking, and commenting were developed and are posted on the HBCD Study website (https://hbcdstudy.org/social-media-policies/) as well as on the HCAC and site profiles, based on precedent and best practices set by the NIH Clinical Center. These policies contain language indicating that “follows” and “likes” are not synonymous with endorsements. Additional guidelines for commenting on content include reminders that posts can be viewed by a broad audience and that information that is personal, medical, or identifiable should not be shared. The policies also note that the HBCD Study reserves the right to moderate posts and comments that violate privacy, are off-topic or misleading, spam, or are otherwise disrespectful. Comments or posts that are not aligned with the policies are removed by the HCAC or study site account administrators. However, if a comment or post is otherwise negative but does not violate policy, a thoughtful, professional, and compassionate response is provided.

By allowing comments and reactions to posts, HBCD social media aims to promote transparency and establish a dialogue with local communities. Support and guidance are available to social media points of contact in drafting language to respond to comments through the Social Media WG as well as the HBCD Study Crisis and Communications Team. Social media pages are monitored for comments, messages, and any interactions daily. Messages are answered by the account administrator or are directed to the appropriate parties to address any questions, comments, or concerns. While comments on HBCD posts are welcome, HBCD social media accounts, including both the centralized HCAC accounts and site-specific accounts, do not comment on posts made by other accounts. Site-specific accounts are encouraged to send direct messages to participants for study retention purposes as well as respond to inquiries from interested study candidates. Any direct messages received by the centralized HCAC account are triaged to the most relevant study site or referred to the HBCD Study website.

The Social Media WG curates and brainstorms content ideas regularly. Membership of the Social Media WG includes HCAC staff and federal collaborators from NIH, as well as staff from individual research sites that have opted into establishing their own social media accounts, including research assistants, research coordinators, study navigators, principal investigators, and co-investigators. The WG develops a content calendar monthly, featuring approximately 3–5 posts per week (see Fig. 2 for a sample Instagram post). Given that the average social media user spends approximately 1–2 hours per day on social media (Dixon, 2023), this frequency of posting was determined to ensure accounts appear active but do not overwhelm followers with HBCD-specific content. As described above, posts include messaging related to study recruitment but also cover a diverse range of other topic types, including explanations of study procedures such as EEG or MRI, highlights of specific study sites and team members, holidays and themed days, resources for parents and families, and scientific discoveries related to HBCD or published by HBCD investigators. Providing a diverse range of content helps to maximize audience engagement. Each Social Media WG member is expected to contribute to the writing of posts and hashtags, identifying photos and imagery to accompany text, and editing post content to ensure that it is factual, engaging, inviting, and non-stigmatizing for marginalized populations, pregnant people, and people with substance use and other mental health conditions. A subset of 1–3 members of the Social Media WG also translate 5+ posts each month into Spanish and coordinate with the Spanish Language Committee (SLC; Anunziata et al., this issue) to ensure a conversational and thoughtful tone to each translation (see Section 2.3 below for details on the translation process). After the Social Media WG finalizes each monthly content calendar, the calendar is sent to the broader CED Committee for additional review and approval. Posts related to study recruitment, retention, or other study procedures are then sent to the sIRB for final review and approval. An sIRB amendment is in place allowing for the sharing of content that is based on publicly available information or resources, or that involves scientific publications, site, or team highlights. This allows HCAC and site-specific social media accounts the flexibility to immediately post these types of content without additional sIRB approval. The Meta Business Suite function is used for managing and scheduling posts. Sites can also make minor edits to posts found in the content calendar to add to their site-specific social media accounts as well as create site-specific content not found in the content calendar and post them after going through the full review processes.

Fig. 2.

Sample @HBCDStudy Instagram post.

Many HBCD social media posts also feature hashtags for greater reach of posts to anyone who follows that hashtag, not just people who follow the HBCD-specific accounts. The hashtag #HBCDStudy is commonly used, as well as other tags on topics that may be of interest to the target audience such as #newparent or #pregnancy. Sites are encouraged by the Social Media WG to look up the number of followers or posts associated with any hashtag under consideration on Facebook and Instagram to ensure that they are using tags that will reach a strong audience. For example, #pregnant and #pregnancy may have a different number of followers or posts associated, and a site may prefer to use one or the other depending on the audience they would like to reach. While the HBCD Study social media presence is still in its early stages, engagement metrics are being monitored. As of Spring 2024, Facebook in particular appears to be a major source of referrals to the HBCD website.

2.3. Integration across the Consortium: a focus on diversity, equity, and inclusion

The HBCD Study is recruiting a diverse cohort of pregnant participants and their children across the United States (Si et al., this issue), including both English and Spanish-speaking participants. To capture the diverse backgrounds of potential and current participants, including many who may have faced discrimination and stigma, it is important to engage in meaningful dialogue across the Consortium about how to create communication materials that are welcoming, informational, and inclusive. The CED Committee interfaces closely with the Diversity, Equity, and Inclusion (DEI) Committee (Murray & Slopen, this issue), the Recruitment, Retention, and Community Engagement (RRCE) WG (Jones Harden et al., this issue), the Bioethics and Medical Oversight (BMO) Committee, and the SLC (Anunziata et al., this issue) to identify gaps in current communications strategies and suggest solutions that may meaningfully engage the HBCD Study population. These groups provide important input on ongoing content development and the review of flyers, videos, and other informational material.

To engage Spanish-speaking communities in a meaningful way and ensure content is accurately conveyed, all centralized CED materials are translated into Spanish with the assistance of the SLC, which includes fluent Spanish-speaking HBCD team members from various backgrounds and study sites across the Consortium. The SLC reviews all materials translated into Spanish for readability, flow, and tone (see Fig. 3 for an example of a dual-language material). Most often, materials are translated into Spanish by a certified translation service and are reviewed, edited, and ultimately approved by the SLC.

Fig. 3.

Dual language recruitment poster. All Spanish-language translations are reviewed by an internal Spanish Language Committee (SLC).

The CED Committee and Social Media WG’s standard operating procedure includes guidance on choosing imagery (Hulsey et al., 2023). The use of language and imagery that feature people of various ages from diverse cultural, racial, ethnic, and gender backgrounds and family structures (e.g., inclusive of a broad, varied family unit(s): grandparents, siblings, and other extended family, same-sex couples, etc.) is strongly encouraged for both centralized and site-specific materials. Diverse photos should not be limited to patients and participants but also of clinicians, doctors, and researchers as there is no single specific “look” that represents how a participant, doctor, or researcher should appear. For social media posts, resources and articles that enforce a strict or narrow view of stereotypical parent(s) or family units are avoided.

Finally, to ensure these values and processes are implemented across the Consortium, the CED Committee and Social Media WG developed guidelines for maintaining consistent and inclusive messaging and avoiding the use of potentially stigmatizing language. Generally, all materials, including social media content, are developed at a grade school to high school reading level, are gender-inclusive (https://www.nih.gov/nih-style-guide/inclusive-gender-neutral-language), and avoid wording and imagery choices that may be stigmatizing or promote negative bias. For example, CED materials and social media content maintain a focus on “person-centered” language, use terms that are mindful of biases about pregnancy and parenthood, and avoid referencing resources that might include shaming or dichotomous language. The Social Media WG also promotes the use of language that is conversational, including the use of contractions to ensure active engagement with the audience.

2.4. Product development workflow

New content development for the HBCD Study can be initiated at various levels within the Consortium, although all materials flow through a similar product development process (Fig. 4). The two main streams of product development include the creation of site-specific materials and the creation of centralized, Consortium-wide materials. Consortium-wide materials are those relevant to the communication of study goals, procedures, and benefits to aid participant recruitment and community engagement. These materials require consistent messaging to build trust and rapport locally and nationally. Site-specific materials are those most relevant for local context needs, such as engagement with local HBCD partners, communication of site-specific resources and procedures, and participant engagement and retention strategies. The materials creation process is bidirectional, such that both centralized and site-specific feedback are combined to inform the creation of final products.

Fig. 4.

Integrated product development workflow beginning at concept submission (1) and ending with single Institutional Review Board (sIRB) approval (8). The process is integrative in that both centralized and site-specific feedback are combined to inform the creation of final products (1−4) and includes Spanish language translation and review by an internal Spanish Language Committee (4−7). CED = Communications, Engagement, and Dissemination Committee; DEI = Diversity, Equity, and Inclusion Committee; HCAC = HBCD Consortium Administrative Core; HDCC = HBCD Data Coordinating Center.

The HBCD Study has an sIRB designated to review and approve both site-specific and Consortium-wide products (Figs. 4, 4–8), aligned with NIH policy (NOT-OD-21–174). All products are submitted to the sIRB through an sIRB liaison who monitors progress and communicates sIRB feedback. If products require site-specific or other changes to the language, imagery, or information, modifications are resubmitted back through the CED review process and require additional sIRB approval.

Ensuring quick and easy access to the broad range of recruitment and engagement products available to the Consortium is critical so that sites can be informed of their communications options and choose the materials that best fit their needs. Once sIRB approval is received, all Consortium-wide materials are uploaded into a single repository located on an internal web-based platform (Fig. 4, 8) for access across the Consortium. The repository contains a thumbnail of the material along with critical information on the recommended context for the use of the material, details of printing requirements, and tip sheets if the materials are modifiable for local adaptation.

3. Current and future content

The development of CED content draws on principles social marketing (Nichols et al., 2004) to create health communications informed by community engagement and targeted to a wide range of audiences. Over the past 2 years, CED materials have targeted potential participants, current participants, and HBCD partners, including CABs. The primary focus of the CED Committee has been the creation of recruitment products to support a four-year enrollment window from 2023 to 2027 with the goal of enrolling a cohort of over 7000 participants, 25 % of whom have substance exposure during pregnancy and 75 % of whom have no substance exposure during pregnancy (Si et al., this issue). The approach of the CED has been to create materials that focus on broadly engaging pregnant populations, as opposed to targeting specific participant characteristics (e.g., substance use during pregnancy), and harnessing altruistic motives aligned with the broader goals of the study – to advance the health of future generations of children across the nation. In addition, the CED has also created education, retention, and engagement materials, many of which are used to engage HBCD partners as well as participants, and taken together, all CED materials present a cohesive and unified HBCD message and brand.

The inclusive CED approach has been significantly informed by qualitative data collected during the extensive 18-month pilot phase of the HBCD Study that suggested several practices for overcoming barriers to research for pregnant participants, including those with a history of substance use (Beasley et al., 2020, Davis et al., 2019). Combined with feedback from the DEI Committee, the RRCE WG, and local CABs whose members include community partners reflective of populations at each recruitment site, the CED Committee has focused on developing materials that, 1) convey the purpose and scope of the research, 2) explain research activities and logistics, 3) utilize a multimedia approach (i.e., printed materials, social media, a study website, etc.), and 4) use clear, consistent, and inclusive messaging that reduces stigma and negative bias towards marginalized populations, including people with substance use and other mental health conditions. This approach led to the creation of 1) multiple recruitment flyers and a trifold brochure that explains the HBCD Study goals and objectives, 2) infographic flyers that use plain language to communicate complicated study procedures, including MRI, EEG, and wearable sensors, as well as a consent visual aid and a roadmap of what to expect during the first three study visits, and 3) the creation of videos, the HBCDStudy.org website (Fig. 5), and social media pages that cross-post communications content.

Fig. 5.

HBCDStudy.org website landing page.

The creation of the consent visual aid (Fig. 6) is a hallmark example of the collaborative process of content creation within the HBCD Study Consortium. During the early piloting of study visits, recruitment sites expressed a need to develop materials to aid in the informed consent process. The RRCE WG (Jones Harden et al., this issue) prepared a two-page document to be used by study staff to help them clearly and simply review the study procedures, benefits, and risks that were described in the study consent form. The CED Committee recognized the two-page document as a valuable Consortium-wide resource and further developed the document as a participant-facing material to increase visual content and align the messaging with other Consortium-wide resources. The final product was adopted by all recruitment sites and is used as part of the standard informed consent process.

Fig. 6.

Consent visual aid was created as a recruitment resource to visually inform participants about the study and complement the consent process while aligning the messaging with other Consortium-wide resources.

The HBCD Study Testimonial video (HEALthy Brain and Child Development HBCD Study, 2023) is another example of the collaborative process of product development among CAB members, scientific partners, and the CED Committee (see Fig. 7). This collaboration was born of the need to present the experiences of real people associated with the study while protecting the privacy of study participants. Initially, the CED Committee conducted interviews with community and scientific partners to understand their reasons for ongoing engagement with the HBCD Study. From these interviews, a few common themes emerged, including an interest in using their own experiences to help shape the future of children's health. Three interviews were chosen that reflected this common goal and were framed within a video to help increase awareness of the HBCD Study and promote participation.

Fig. 7.

HBCD Study video (HEALthy Brain and Child Development HBCD Study, 2023) includes information about the study and features three brief testimonials from community and scientific partners.

Engaging participants and HBCD partners in longitudinal research studies requires a multifaceted approach to sustain interest, commitment, and trust. Drawing on the ongoing success of the ABCD Study® in maintaining high retention rates across the duration of the study (>90 % at 7 years), the HBCD Study will pursue a similar multipronged outreach and communication plan with frequent material updates as well as participant appreciation and community-building initiatives designed to foster long-term partnership. These practices align with those of other large national studies, such as the NIH All of Us Research Program, and include personal communications – such as thank-you and birthday messages, newsletters that share relevant study information, and dissemination of research findings and scientific discoveries (Khodyakov et al., 2018). The CED Committee has created several products that facilitate engagement with participants and families including cards celebrating study enrollment, baby’s birth, and other milestones. These cards can be sent by mail, electronically, or delivered in person to provide ongoing contact (i.e., light touch) with participants in between study visits to build and maintain rapport.

Starting in Fall 2023, the CED Committee launched a newsletter to be used as a warm resource for engaging participants and HBCD partners by introducing individual members and groups within the Consortium. The newsletters also include spotlights on study procedures, updates on study progress, new and emerging findings, and informational resources geared to HBCD Study participants and their families, offering valuable insights into the study’s broader impact. Newsletters are shared via multiple channels, such as email, social media, and print, and can be viewed here: https://hbcdstudy.org/newsletters/.

Future communication and outreach plans will include dissemination of research findings to support a culture of community and transparency throughout the study. In addition, as study findings become available and publications from HBCD data are generated, infographics and webinars will be launched that are tailored for the general public and communicate complex scientific concepts into accessible, informative, and timely content.

4. Lessons learned

Developing communications strategies for a multi-site study presents significant challenges. Balancing site-specific communication with a consistent national message is crucial, as both strategies offer unique benefits. A consistent national message helps establish a reputation that conveys credibility, builds trust, and demonstrates a commitment to delivering reliable scientific advancements for the betterment of public health. Additionally, a centralized strategy can streamline operations and reduce the workload on study staff by outsourcing materials development to a single entity. However, a fully centralized approach may hinder study recruitment and retention if materials do not resonate with local communities. Here we discuss the initial hurdles faced in finding this equilibrium and the lessons learned when addressing challenges.

The centralization of recruitment materials that communicate study goals and procedures offered a streamlined and standardized approach, but it limited sites’ ability to address their specific recruitment needs. Any required changes to the language, imagery, or information necessitated revision and resubmission for additional CED and sIRB approval, leading to administrative burden and delays in material adoption. To resolve the tension between centralization and local context, the CED Committee focused on creating a wide selection of Consortium-wide recruitment materials that could be adapted for local use. Various methods were implemented to enhance material flexibility while ensuring consistency. Templates were created with modifiable elements within the material and accompanying guidelines on permissible modifications. For example, images used in recruitment materials may be substituted with a curated selection of diverse sIRB-approved images representing the demographics of the recruitment catchment area. In cases where flexible templates are not feasible, often due to complex adjustments required for visual or graphic elements, the CED Committee has established guidelines for permissible modifications to sIRB-approved materials. These guidelines outline specific elements, such as contact information, QR codes, and site-specific websites, that can be incorporated into sIRB-approved materials as well as elements that can be omitted. These modifications only require CED review and approval and do not necessitate additional review by the sIRB. Identifying procedural solutions that adhere to sIRB guidelines has helped reduce administrative workload and may further increase the agility and flexibility of materials to respond to site-specific recruitment needs.

Recently, the CED Committee has begun the development of warm resources and enhanced the HBCD social media presence to build rapport with participants and their families. Centralized retention materials and a national social media presence provide a solid foundation for engagement but both strategies are augmented by parallel decentralized approaches to support the cultivation of relationships between participants and local sites. Site-specific social media content highlighting local activities and showcasing study staff can create more personable interactions and help foster rapport. Similarly, allowing flexibility for site-specific text messages, cards, or light-touch materials that better reflect the local study teams, participants, and families can aid in building these relationships.

5. Conclusion

The HBCD Study stands as the largest long-term study of early brain and child development in the United States. As the study and its participants grow, the CED Committee will continue to develop and adapt communications strategies to ensure robust recruitment, and meaningful engagement of participants, their families, HBCD partners, and the public. Community-driven dissemination of scientific discoveries generated from HBCD Study data will be a priority of the Consortium and CED Committee. To date, the CED Committee has established important collaborations within the Consortium, engaged with local CABs through study sites, and optimized internal workflows to drive innovation. Through these collaborations, the CED Committee has created a large portfolio of versatile recruitment materials and successfully initiated a social media presence for both recruitment and engagement. More recent work has focused on materials that cultivate and nurture participant relationships at both the local and national levels and are essential for a longitudinal study. The HBCD Study is positioned to unveil groundbreaking scientific discoveries on early life development, made possible by the dedication and contributions of participating families. The CED Committee and HBCD Consortium aim to ensure that HBCD families remain engaged with and informed about the outcomes of their involvement, enabling them to witness the direct impact of their participation on advancing health for future generations of children.

CRediT authorship contribution statement

Karla R Estrada: Writing – original draft, Project administration. Micaela Parkinson: Writing – original draft, Project administration. Chloe J Jordan: Writing – review & editing, Writing – original draft, Project administration, Conceptualization. Katherine M Cole: Writing – review & editing, Writing – original draft, Project administration, Conceptualization. Katia D Howlett: Writing – review & editing, Project administration, Conceptualization. Michelle P Freund: Project administration, Conceptualization. Julie M Croff: Writing – review & editing, Writing – original draft, Project administration. Elizabeth A Hoffman: Writing – review & editing, Writing – original draft, Project administration.

Declaration of Competing Interest

The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Julie M. Croff reports financial support was provided by National Institutes of Health and the Bill & Melinda Gates Foundation. Julie M. Croff reports a relationship with Oklahoma State University Center for Health Sciences that includes: funding grants, speaking and lecture fees, and travel reimbursement. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.