Agenda

Attendees check in for the meeting and pick up meeting information and materials.

Join us for an optional welcome reception before the meeting begins.
Drinks will be served from 6:30–7:30 PM.
Dinner will be served starting at 7:30 PM.
This event is restricted only to attendees.

Attendees check in for the meeting and pick up meeting information and materials.

Welcome from ARIA Leadership

Introduction to the IMPACT Network and the Clinical Coordinating Center

Name, Institution, Network Role

• Research Hubs and IMPACT Network Integration
• Centralized Services
• Governance and Leadership

• IMPACT Network status as of May 2026
• Defining success for the Summit before Friday’s departure

• Human stakes of ARIA and the IMPACT Network
• Addressing the representation gap
• What external stakeholders need from this Network
• Q and A

All attendees to gather for group photo

• IMPACT-Ready Study objectives, design, and development
• Selection framework for Cohort 1 genes
• Inclusion, focus, and goals for Cohort 2
• Introduction to the Master Protocol and Site Feedback Summary
• Q and A (20 minutes)

• How CCC and Participating Sites will communicate
• Role-based expectations for PIs, Project Managers, Data Managers, and more
• ARIA Connect
• Q and A (5 minutes)

• Regulatory Overview (25 minutes)
  • Regulatory oversight and processes
  • Protocol submission timeline
  • sIRB and reliance process
  • eRegulatory binders and eConsent
• Assessment Overview (20 minutes)
  • Developmental/behavioral assessments
  • Biomarker battery
  • Equipment overview
  • Training overview
• Data Overview (15 minutes)
  • Study Site and CCC roles overview and division of responsibilities
  • Mock data trials and transfer process scorecard timeline
  • Quick preview for data-focused sessions on Thursday
• Open Q and A (20 minutes)

• Daily recap
• Introduce the concept of Demo Stations

Attendees grab a drink and circulate through interactive resource stations to meet vendors, ARIA Connect representatives, and community collaborators

Introduction and agenda for Day 2

• Introduction to Lasso Informatics
• Lasso system high-level demonstration
• Data analysis
• Integration with other centralized services

• Mayo Clinic Bioservices high-level demonstration
• Collection of required and optional biosamples

• Genetic considerations for study eligibility — cross-sectional and longitudinal participation
• Variant prioritization and reporting
• Return of results
• Broad Clinical Labs high-level demonstration and technical step-by-step

Set clear rules of engagement prior to afternoon breakouts and explain where people should go after lunch.

• Breakout 1: Study Operations
• Breakout 2: Biomarkers and Quantitative Phenotyping
• Breakout 3: Data Management
• Breakout 4: Clinical Phenotyping

Breakout leaders consolidate information from sessions

Breakout readouts and all-group discussion

• Synthesize readouts
• Explicitly name resolutions reached and open questions

• IMPACT Network Clinical Coordinating Center approach to community engagement
• Nonprofit Representatives from AGENDA, Profound Autism Alliance, National Council on Severe Autism, and Simons Foundation
• Q&A (30 minutes, moderated by Ekemini Riley)

• Federal Policy Update

• Introduce ARIA Connect as a communications and ecosystem community infrastructure
• Establish norms for cross-site communication

A grounding reflection on the ultimate goal of ARIA