The Project

Purpose

A primary goal for the Healthy Brain Network is to generate a large-scale, transdiagnostic dataset that captures the broad range of heterogeneity and mental health and learning disorders that exist in developmental psychopathology. The study will build off the successful implementation of The Nathan Kline Institute - Rockland Sample (NKI-RS) Initiative and focus on data collection efforts for establishment of the HBN open data sharing initiative.

Sampling Strategy

HBN's sampling strategy was developed to achieve the study’s primary goal after considering the relative merits of the adopted strategy versus a fully representative epidemiologic design. While ascertainment is not clinic-based, per se, the strategy of recruiting based on perceived clinical concern dictates that the Healthy Brain Network sample will include a high proportion of individuals affected by mental health or learning disorders. Nonetheless, despite the lack of rigorous epidemiologic ascertainment, the intended scale of data collection and the inclusion of diverse communities across New York City may approximate representativeness in the sample. The scale of the sample should also allow investigators to study selected sub-cohorts of interest for targeted study (e.g., comparing individuals with ADHD across demographic groups). As the project advances towards the desired scale, sampling strategies may shift towards creating representative epidemiological sub-cohorts.

Community Impact

The Healthy Brain Network provides participants with no-cost comprehensive diagnostic evaluation reports, which include clinical impressions and actionable treatment recommendations, when appropriate. The reports can be used to acquire an Individualized Education Program (IEP) or Section 504 Accommodation Plan (504 Plan) - a prerequisite for obtaining school accommodations and services - as well as specialized classroom placements. A feedback session and local referral information are provided to participants and their families, along with modest monetary compensation for their time and expenses incurred.

Community Referred Recruitment

Outreach efforts, as detailed below, were varied and active between the program launch in 2015 and 2018. During the first stage of the HBN initiative, the marketing team adopted a community-referred recruitment model using advertisements to encourage participation of families who have concerns about mental health or learning difficulties in their child. The advertisements were distributed to community members, educators and local care providers, and directly to parents via e-mail lists and events. The advertisements highlight the potential value of participation for children who may require school-based accommodations.

Referral Partnerships proved to be the most valuable recruitment mechanism, delivering the highest return on time and dollar investment, and accounting for the bulk of enrollment. As word of mouth spread among families, as well as the educators, health care providers and community groups that referred them, generating more interest than we could accommodate, outreach efforts decreased in favor of waitlist management. Although, with the opening of the Harlem office in 2019, outreach focused on developing community referral partners was conducted near that evaluation center through early 2020.

1. Health and Community Fairs: Resource tabling at health and community fairs figured prominently among HBNs initial recruitment strategies.
2. Print and Billboard Advertising: The HBN initiative ran traditional advertising campaigns in print publications targeting NJ and Staten Island parents, and billboard advertising targeting Staten Island commuters.
3. Digital Marketing: The Healthy Brain Network's primary digital marketing effort was and continues to be the Healthy Brain Network recruitment website. Families or potential referral partners can find information about the program or submit an inquiry on the site. Other digital marketing strategies consisted of email/call campaigns aimed at referral partner development, as well as website adverts, social media marketing, and community resource lists aimed directly at parents and caregivers.
4. Partnerships: The Healthy Brain Network relies heavily on partners to refer participating families for evaluation. These partnerships include schools, pediatricians, psychiatrists, educators, and community service organizations sending families to the Healthy Brain Network. During the 2016 AACAP conference in New York City, the Child Mind Institute hosted an exhibitor booth at the conference. HBN was represented there in an attempt to establish relationships with potential referral partners. But most referral partners were secured through phone calls, emails, in-person visits and meetings.
5. Branding: The support of both State Senator Andrew Lanza and the Staten Island Borough President’s office has been integral to the Healthy Brain Network's success in Staten Island.
6. Media: The Healthy Brain Network recruitment has benefitted from media attention in a variety of forms. Some examples are:
   • News channel NY1 covered the Healthy Brain Network launch on Staten Island.
   • The Staten Island Advance wrote several stories announcing the impending launch and welcoming the arrival of the study when its flagship clinical office first opened in the borough (see also the op-ed written by Dr. Michael Milham).
   • WNYC Radio ran a piece on the Healthy Brain Network search for physical markers of mental health disorders.
   • NYMetroParents.com headlined the Healthy Brain Network in a feature about the science behind the study.
   • Staten Island Community Television hosted a panel discussion on mental health in the borough between Dr. Milham and the Staten Island Borough Presidents Director of Health and Wellness, Dr. Ginny Mantello, chaired by Dr. Kaur.

Inclusion/Exclusion

With few exceptions, the presence of psychiatric, medical, or neurological illness does not exclude participation. Primary causes for exclusion center on the presence of acute safety concerns (e.g., danger to self or others), cognitive or behavioral impairments that could interfere with participation (e.g., being non-verbal, IQ less than 70) or medical concerns that are expected to confound brain-related findings (see table). All individuals meeting inclusion criteria, without any reasons for exclusion, are invited to participate in the study.

Project Phases

The HBN has a four-phase project plan. The goals for each of the phases are as follows:

• Phase I: Implementation and Testing (Participants 1-500; completed). The overarching goal of the initial phase was to establish a prototype HBN Diagnostic Research Center, located in Staten Island, New York (one of the five boroughs of New York City). Prototype development was intended to establish all project workflows and strategies/procedures for recruitment, diagnostic evaluations, phenotypic assessments, and a post-study referral network. The initial protocol included diagnostic evaluations, phenotypic assessments, electroencephalography (EEG) and magnetic resonance imaging (MRI). During the initial phase, we also evaluated the feasibility and benefits of using a mobile MRI scanner, as well as a mobile Diagnostic Research Center.
• Phase II: Revision and Hardening (Participants 501-1000; completed). A key challenge for almost any large-scale study is balancing the desire to maintain stable protocols and assessments across the entirety of a sample, with the potential benefits of integrating new measures and making changes based on learning from experiences and scientific advances along the way. Phase II of the Healthy Brain Network had two primary goals: 1) the addition and/or deletion of protocols established during Phase I, based on lessons learned and new developments; and, 2) hardening the revised protocols to ensure that they are as optimal and robust as possible, while also reflecting the current state of the art in science and practice.
• Phase III: Scale-up (Participants 1001-8500; in progress). Building on the experience and lessons learned from phases I and II of the project, the Healthy Brain Network has started Phase III, with the goal of enrolling 7,500 participants in our established protocol. This goal necessitates increased capacity for both recruitment and enrollment. As such, Phase III includes additional Diagnostic Research Centers and MRI scan sites in the New York City region; sites are being chosen to increase the diversity of populations that can be reached.
• Phase IV: Targeted Recruitment (Participants 8501-10000; planning). The final phase of the Healthy Brain Network will incorporate epidemiologic sampling to recruit an additional targeted representative sample of 1,500 participants.

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