NTG Collaborations

The NTG is collaborating the LuMind IDSC Foundation, along with an international working group of clinicians, scientists, and others, who were tasked with defining equivalency for determining eligibility for adults with Down syndrome in accessing FDA-approved therapeutics for Alzheimer's disease.  States are charged with establishing criteria for accessing such medications based on data available from the FDA.  All state-determined prescribing criteria for identifying the presence and nature of MCI and early-stage dementia for the general population omit specific mention of the inclusion of adults with Down syndrome.  As a result, this group of adults may be excluded by prescribers as no guidance is offered on how to meet the criteria.  One deficiency is the lack of tailored guidance for diagnosis when using tests designed for use with the general population. The working group worked to define equivalency measures for diagnosing adults with Down syndrome that would be integrated into state pharmaceutical eligibility determinations for being prescribed FDA approved Alzheimer's disease therapeutics. The group has now issued the first of its reports.   FMI: Check the LuMind IDSC website or go to project page. 

To access the report, click here

The NTG, along with two provider organizations in Ohio, collaborated with the Gerontological Society of America (GSA) to produce its first disability companion to the GSA's KAER Toolkit, Addressing Brain Health in Adults With Intellectual Disabilities and Developmental Disabilities: A Companion to the KAER Toolkit for Primary Care Providers. The new companion on intellectual disability and dementia, was launched in draft form at the GSA's 2023 Conference in Tampa, Florida.  The new companion specifically focuses on issues relevant to intellectual disability and dementia, providing guidance for health workers, support personnel, and caregivers. It includes specific information, paralleling that of the main Toolkit, on screening, assessment, and diagnosing dementia, resources for clinicians and caregivers, and information on brain health and risk reduction. GSA is undertaking efforts to have the companion accompanied by various media products, such as webinars, podcasts, trainings, and an infographic, designed to make the Companion's information more readily available to a broader audience. 

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On January 17, 2024, Patricia D’Antonio the Vice President of Policy & Professional Affairs for the Gerontological Society of America offered public comment to the federal Advisory Council on Alzheimer's Research, Care, and Service related to the publication of the toolkit companion. To read her public comments, click here.

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To download a copy of the KAER Toolkit - Addressing Brain Health in Adults With Intellectual Disabilities and Developmental Disabilities: A Companion to the KAER Toolkit for Primary Care Providers.

The NTG collaborated with the National Down Syndrome Society on a series of conferences, termed the Adult Down Syndrome Summits. The first was in Arlington, Virginia in 2018 and the second in Detroit, Michigan in 2019. The third in 2020 was virtual conference due to the COVID-19 corona virus pandemic. The fourth in 2021 was held in Jacksonville, Florida. A mini-adult summit, built into the NDSS Conference, was held in November 2022 in Cincinnati, Ohio. A full Adult Summit was held in Cincinnati, Ohio on November 9-11, 2023.  FMI: Check the NDSS website

The NTG is collaborating with the Geriatrics Workforce Enhancement Programs (GWEPs) at the University of Rhode Island and Virginia Commonwealth University to undertake a series of ECHO programs on intellectual disability and dementia. These efforts are supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant numbers U1QHP28737 and U1QHP28744 to the universities. A descriptive article about the first series is available here.  The Spring 2024 series in currently being planned.

The NTG is collaborating with the Health Matters Program at the University of Illinois at Chicago on several efforts, which have included working together on a national survey of disability services providers as to the impact of COVID-19 corona virus on their clientele, staff, and services, and is currently part of a national education and public awareness grant program, funded by the Centers for Disease Control, to affect brain health among persons with intellectual disability and reduction of the development of dementia.  FMI: Check the Health Matters website

The NTG jointly produced and distributed a quarterly Newsletter for caregivers together with the National Down Syndrome Society.  Current production has been suspended.  Archived copies can be accessed on our Family Newsletter page.

The NTG collaborated with the National Down Syndrome Society on the developmental of a booklet on Down syndrome and Alzheimer's disease.  The booklet is available on the NTG's Family Support page.

The NTG collaborated with several US based Down syndrome organizations and foundations (Global Down Syndrome Foundation, Down Syndrome Medical Interest Group-USA, LuMind IDSC Down Syndrome Foundation, National Down Syndrome Congress, and National Down Syndrome Society) on number of sequentially issued Question and Answer (Q&As) addressing what families, organizations, and persons with Down syndrome wanted to know about the impact of COVID-19 on people with Down syndrome. With the pandemic in abatement, these materials are still available in our archives.  FMI: See the COVID-19 & ID page