Page Last Updated: May 12, 2026

Study Navigator Contact Form🔗

The Study Navigator Contact Form data is provided by the Study Navigator, or person who is offering Study Navigator services, during and/or between study visits (V01-V06).

Release Data🔗

Study Navigators were strongly encouraged, but not required, to fill out the Study Navigator Contact Form. Guidance was provided to complete the contact form as soon as possible (within 24 hours) after a contact with a participant. Study Navigators were also provided with the option to complete the form to document multiple contacts within a specific time or for a specific participant (text messages, phone calls, etc.). The data is subject to recall bias.

The Study Navigator Contact Form was created for the HBCD Study as a document for characterizing participant contacts and support. The form was developed by integrating metrics from documents used in similar support professions (e.g. certified peer support, case managers, doulas, social workers, etc.). Use of the form was strongly encouraged but not mandatory for Study Navigators to complete.

There is wide variation across HBCD sites and Study Navigators in use of the forms, which should be considered in any analyses conducted and conclusions drawn using contact form data. Additionally, some HBCD sites provided study navigator support to all participants, and some sites focused support on participants with substance use and/or participants experiencing significant adversities.

The Study Navigators Contact Form dataset is provided as concatenated data under study_navigator/ (see Data Structure Overview for additional details):

hbcd/
└── concatenated/
    └── study_navigator/
        └── Study Navigator Export

Details🔗

Recruitment and retention in studies involving pregnant individuals who use substances can be challenged by mistrust due to SUD-related stigma. To address this, the HBCD Study integrates certified peer support specialists and/or other support professionals (case managers, doulas, social workers, etc.) i.e., Study Navigators, at each site’s research team to provide participant-centered support throughout the study. Study Navigators may provide support specifically to families that are substance-involved or to a wider range of participants. The breadth of the provision of Study Navigator support is determined based on the needs and capacity of each HBCD site. For details on the conceptual framework, core skills, training, and team integration of support professionals, see Hilliard et al. 2025.

The Study Navigator Contact Form included in the data release captures visit-specific information when participant support is provided. This form was created in 2022 by integrating contact form information from other behavioral health practices from some Study Navigator Workgroup members. The “Support Services Offered” section of the form is original and was created specifically for the HBCD study. This data is purely descriptive and thus not scored. It documents:

Visit details (date, time, location, scheduling, etc.)
Support topics discussed
Actions taken during each contact

What is a contact?🔗

A “contact” includes all scheduled or unscheduled interactions relevant to the study or when providing additional support services to the participant. Contacts can be face-to-face interactions, phone calls, text chats, or other forms of communication between a participant and a research team member providing navigation services.

There are four options the Study Navigator can select to indicate actions taken, i.e. how they responded, for each topic, including:

Action	Description
Referrals	When the navigator initiates a connection between individuals/entities such as a community service, clinical service, or research team member(s). The navigator is contacting this individual/entity to assist the participant in accessing additional support and/or services that they need.
Resources	The navigator shares information (fliers, brochures, websites, etc.) with the participant. The participant can use this content to obtain additional information, support, or services they need.
Discussion	The participant may simply ask the navigator to listen and/or to talk with them about a sensitive matter(s) relevant to the research study or in their personal lives. When appropriate, navigators are responsible for gently reminding participants that they are mandatory reporters. Discussion may be the first step to making a referral or providing a resource.
Other	Any other support the navigator provided that cannot be categorized as a referral, resource, or discussion.

Variable	Description	Possible Values (if categorical)
`FORM_SITE`	Study site of contact	See Global Site ID Mapping
`CV_CUSTOM_ID_COPY`	Participant ID number	—
`FORM_SOURCE`	Respondent	CH (Child); BP (Birth Parent)
`WHO_SCHEDULED_CONTACT`	Who scheduled visit	participant; navigator; research_coordinator_ra; other
`SINGLE_OR_MULTIPLE_CONTACTS`	Single or multiple contacts	one_contact; multiple_contacts
`CONTACT_SITE`	Site of contact	clinic; community; home; hospital; other; phone; research_facility; zoom
`SUCCESSFUL_CONTACT`	Navigator completed a contact with the participant	yes; no
`WHY_UNABLE_TO_CONTACT`	Reason if unable to contact	declined_to_continue; did_not_present; did_not_respond_to_contact; other; participant_left_b4_contact; prefer_to_complete_later; unable_to_complete_due_to_circumstances
`IS_FOLLOW_UP_NEEDED`	Follow-up needed	yes; no
`IS_CONTACT_SCHEDULED`	Follow-up contact scheduled	yes; no
`AGE_IN_WEEKS_EDD_AT_CONTACT`	Age at contact	—
`AGE_IN_WEEKS_EDD_NEXT_CONTACT`	Age at next contact	—
`AGE_IN_WEEKS_EDD_FINAL_NAV_CONTACT`	Age at final contact	—
`AGE_IN_EDD_WEEKS_DATE_OF_COMPLETION`	Age on completion date	—

The following fields include data for topics discussed & actions taken.

Variable	Barrier Type	Response Options¹
¹ Each response value is appended with one of the following to indicate actions taken: /referrals; /resources; /discussion; /other.
`BARRIERS_TO_STUDY_ASSESSMENT_ CHECKBOXES`	Relevant study domain(s)	biosensors; biospecimen_collection; eeg; mri; observational_assessments; surveys; other
`BARRIERS_TO_STUDY_ASSESSMENT_ CHECKBOXES_PART_2`	General	childcare; concerns_about_confidentiality; family_instability; lack_of_time; transportation; other
`PREGNANCY_AND_LABOR_CHECKBOXES`	Pregnancy & labor	newborn_and_infant_care; labor_birth; maternal_perinatal_health; postpartum_care; other
`CHILD_HEALTH_CHECKBOXES`	Child health	mental_health; physical_health; safety; other
`PARENTS_GUARDIANS_CHECKBOXES`	Parent or guardians	mental_health; parenting; physical_health; safety; other
`BROADER_FAMILY_HEALTH_CHECKBOXES`	Family health	caregiving; mental_health; physical_health; safety; other
`SOCIOECONOMIC_RESOURCES_CHECKBOXES`	Socioeconomic	childcare; financial; food_nutrition; housing; transportation; other
`SUBSTANCE_USE_CHECKBOXES`	Substance use	behavioral; medical; recovery; other
`OTHER_CHECKBOXES`	Other	family_crisis; court_or_legal; other

Quality Control🔗

This form is under development for HBCD. Data was collected with guidance using the HBCD Study Navigation Contact Form Guide. Data review and cleaning has occurred 3 times: September 2024, February 2025, and November 2025. Minor updates to the form and the form guide were completed in September 2024 and October 2025.

References🔗

Hilliard, F., Horan, H., Zgierska, A. E., Edwards, R. C., & HBCD Study Navigator Workgroup. (2025). Establishing a model of peer support for pregnant persons with a substance use disorder as an innovative approach for engaging participants in the healthy brain and child development study. Developmental Cognitive Neuroscience, 71(101495), 101495. https://doi.org/10.1016/j.dcn.2024.101495