We recognize the importance of integrating our patients’ and families’ opinions and perspectives in the priorities and design of research projects.

To this end, Boston Children’s Hospital has established a Neurology Family Advisory Council. The IDDRC Innovation, Discovery, and Research Subcommittee of the Advisory Council, invites adult patients and patient family members to dialog with our researchers and inform our research priorities and strategies.

The subcommittee, launched in January 2022, is looking to expand its membership. To qualify, members must be patients of the Boston Children’s Hospital Neurology Department and join the larger Neurology Family Advisory Council.

• To articulate patient/family priorities and quality of life concerns to investigators.
• To provide feedback to principal investigators about research design, patient communication, and patient recruitment strategies.
• To read and comment on drafts of our consent forms and research outreach communications.
• To contribute ideas for programming, webinars, and family meetings.
• To brainstorm with us about issues like improving participant diversity in research.