Tools & Resources

Resources for Researchers

  • +Data & Biospecimens

    Resources that provide qualified researchers access to patient data and biospecimens for the purpose of advancing tauopathy research:

    FTD Disorders Registry

    • Qualified researchers can work with the FTD Disorders Registry team to query de-identified existing data, collect tailored survey data, or propose a collaborative research study.

    4 Repeat Tauopathy Neuroimaging Initiative – Cycle 2 (4RTNI-2)

    • Qualified researchers can apply to access clinical and imaging (dMRI, fMRI, sMRI) data from patients diagnosed with taupathies, including PSP and CBD, enrolled in 4RTNI-2.
  • +Research Tools

    Resources that provide information and access to critical tools, including preclinical models and reagents, for tauopathy research:

    Allen Brain Atlas

    • Online resource that enables scientists to investigate gene expression, connectivity, single cell morphology, electrophysiology data and more from both mouse and human brains. Biological and research tools are also available.

    NINDS Scientific Resources

    • Summary of translational resources supported by the NINDS, including animal models, reagents, and antibodies available to the research community.

    Preclinical Models

    • Access to mouse models and other translational tools commonly used in tauopathy research.
  • +Funding Opportunities

                                        

  • +Rainwater Prize Program

    Click here for information about the Rainwater Prize Program for outstanding advancements in the field of tauopathy research.

Resources for Patients & Families

  • +General Brain Health and Education

    WHO Guidelines for Risk Reduction of Cognitive Decline and Dementia

    In May 2017, the Seventieth World Health Assembly approved the Global Action Plan on the Public Health Response to Dementia 2017-2025. The action plan includes seven strategic action areas and dementia risk reduction is one of them. Risk reduction guidelines for cognitive decline and dementia were developed using the WHO handbook for guideline development. Strong recommendations imply that most individuals would want the intervention and should receive it, while conditional recommendations imply that different choices may be appropriate for individual patients and they may require assistance with adherence. The guidelines include the following:

    • Physical activity was strongly recommended to adults with normal cognition to reduce the risk of cognitive decline.
    • Tobacco cessation interventions were strongly recommended to adults who use tobacco since they may reduce the risk of cognitive decline and dementia.
    • Vitamins B and E, polyunsaturated fatty acids and multi-complex supplementation were not recommended to reduce the risk of cognitive decline and/or dementia.
    • Cognitive training interventions offered to older adults with normal cognition and mild cognitive impairment to reduce the risk of cognitive decline and/or dementia received a conditional recommendation with low quality of evidence.
    • Interventions aimed at reducing harmful drinking in adults with normal cognition and mild cognitive impairment to reduce the risk of cognitive decline received a conditional recommendation with moderate evidence.
    • Weight management interventions for mid-life overweight and/or obesity to reduce the risk of cognitive decline and/or dementia received a conditional recommendation with low to moderate evidence.
    • Lastly, offering hypertension management or diabetes management to adults with hypertension to reduce the risk of cognitive decline and/or dementia both received a conditional recommendation with very low quality of evidence.

    WHO Guidelines Report on “Risk Reduction of cognitive decline and dementia” can be found here: https://www.who.int/mental_health/neurology/dementia/guidelines_risk_reduction/en/

     

    Educational resources related to brain health and function for parents, students, and teachers.

  • +Living with Tauopathies

    Resources to help patients and caregivers understand and manage the challenges of a tauopathy diagnosis.

    The AFTD:

    CurePSP:

     

    Support for families living with neurodegenerative diseases in need of medical equipment and supplies like household chairlifts, rollators and wheelchairs.

    Miracle for Mom:

     

     

  • +FTD Disorders Registry

    Online database to collect information from those affected by tauopathies, with the goal of advancing science and accelerating treatment development.

  • +Clinical Trials

    Information about clinical trials in tauopathies, including studies currently recruiting participants.

  • +Brain Donation

    Information about donating brain tissue to help advance the scientific understanding of tauopathies and aid in the search for a cure.

    The AFTD:

    CurePSP:

Resources for Clinicians