Health

HHS Comment Deadline: Family Caregiving Advisory Council

The Administration for Community Living (ACL), Family Caregiving Advisory Council (FCAC), seek information to be used in the development of the Initial Report, the Family Caregiving Strategy, and public listening sessions being planned for 2020.

The ACL is requesting information to: (1) Assist FCAC in the formulation of goals, objectives and recommendations in support of the development of the Initial Report and the Family Caregiving Strategy (the Strategy); and (2) inform the convening of public listening sessions. The Recognize, Assist, Inform, Support and Engage (RAISE) Family Caregivers Act of 2017 requires that the Secretary (of HHS) establish a process for public input to inform the development and updating of the Strategy, including a process to submit recommendations to the FCAC and provide public input on the same.

Members of the public may submit comments online. More information is available at this Federal Register notice.

HHS Comment Deadline: Administration for Community Living, Advisory Council to Support Grandparents Raising Grandchildren

The Department of Health and Human Services (HHS), Administration for Community Living, is requesting information to assist the Advisory Council to Support Grandparents Raising Grandchildren in the development of an initial Report to Congress. Per the “Supporting Grandparents Raising Grandchildren Act,” the initial Report to Congress “shall include best practices, resources, and other useful information for grandparents and other older relatives raising children” including, if applicable, any information related to the needs of children who have been impacted by the opioid epidemic; an identification of any gaps in resources or information; as well as considerations of the needs of members of Native American tribes.

Members of the public may submit comments online. More information is available at this Federal Register notice.

NIH Meeting: BRAIN Initiative, Neuroethics Working Group

The National Institutes of Health (NIH), Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, will hold the ninth meeting of its Neuroethics Working Group. The Working Group is a group of experts in neuroethics and neuroscience that serves to provide the NIH BRAIN Initiative with input relating to neuroethics. 

Members of the public may attend in person or via webcast. More information is available at this NIH website.

OSTP Comment Deadline: Request for Information on the American Research Environment

The Office of Science and Technology Policy (OSTP), National Science and Technology Council, Joint Committee on the Research Environment, seeks public comments on a request for information on actions that Federal agencies can take, working in partnership with private industry, academic institutions, and non-profit/philanthropic organizations, to maximize the quality and effectiveness of the American research environment. Specific emphasis is placed on ensuring that the research environment is welcoming to all individuals and enables them to work safely, efficiently, ethically, and with mutual respect, consistent with the values of free inquiry, competition, openness, and fairness.

On December 17, 2019 (84 FR 68958), OSTP extended the comment deadline from December 23, 2019, to January 28, 2020.

Members of the public may submit comments by email. More information is available at this Federal Register notice.

NIH / FDA Workshop: Expanding AAV Manufacturing Capacity for Rare Disease Gene Therapies

The National Institutes of Health (NIH), National Center for Advancing Translational Sciences, and the Food and Drug Administration, Center for Biologics Evaluation and Research, will hold a workshop titled "Expanding AAV Manufacturing Capacity for Rare Disease Gene Therapies." 

Current adeno-associated virus (AAV) manufacturing capacity cannot keep pace with the demand for AAV gene therapy clinical trials. The purpose of the meeting is to bring together thought leaders, key stakeholders and innovators to explore obstacles and identify opportunities for expanding the capacity of AAV manufacturing for rare disease gene therapies. 

Workshop sessions will explore:

  • Prominent manufacturing formats and technologies
  • Major logistical bottlenecks
  • Strategies to streamline scale transitions
  • Master file best practices and opportunities
  • Analytics and lot release testing
  • Prospects for innovation, and barriers to innovation

Members of the public may attend in person with advance registration, or via webcast. More information is available at this event registration website.

HHS Meeting: 2020 Office of the National Coordinator for Health Information Technology Annual Meeting

The Department of Health and Human Services (HHS), Office of the National Coordinator for Health Information Technology (ONC), will hold its 2020 ONC Annual Meeting, titled "Connecting Policy and Technology: Bringing the Electronic Health Record to the Patient." The event will gather approximately 1,200 health information technology (IT) partners for a combination of plenaries and breakout sessions covering a variety of health IT, healthcare, and innovation topics. 

Agenda items include, among others, discussions on unique patient IDs, innovations in health IT, balancing patient privacy and data access, and perspectives from Congress. 

Members of the public may attend in person with advance registration by December 20, 2019. More information is available at this HHS website.