The UW Alzheimer’s Disease Research Center is committed to sharing resources, data, and samples with investigators at the UW and at institutions across the world. UW ADRC has a strong tradition of sharing tissue, cells, biofluids, DNA, data, and computer software. Please consider requesting resources from the following ADRC cores.
Consistent with achieving the goals of the ADC Program, UW ADRC shares specimens with other research scientists both within and outside the ADC Program, as well as data concerning clinical core participants with the NIA-sponsored National Alzheimer’s Coordinating Center (NACC), where uniform data from all ADCs is stored centrally.
Our plan to share data, materials and our management of intellectual property adheres to the NIH Grant Policy on Sharing of Unique Research Resources, including the Sharing of Biomedical Research Resources Principles and Guidelines for Recipients of NIH Grants and Contracts; NIH Principles and Guidelines document; and Final NIH Statement On Sharing Research Data. Final, published datasets will adhere to best practices and the guidelines of the scientific community.
Resource categories you will find listed below: Tissue; Clinical Core; Data Management & Statistics; Satellite Core (Data on Alzheimer’s disease (AD) and vascular brain injury in American Indian populations); Adult Changes in Thought (ACT) Study; Transcriptomic characterization; Peptide structures and publications; Model organisms; AMP-AD Knowledge Portal data.
The ADRC Neuropathology & Targeted Testing Core is committed to sharing well characterized research specimens with researchers within and outside of the ADC program. The NPTMT brain bank maintains samples of neurological autopsy tissue including frozen, formalin fixed and paraffin embedded, formalin fixed, and fresh tissues. Tissues undergo comprehensive neuropathological evaluation and are correlated with clinical research data collected during life.
To request tissue, access the UW Neuropathology Core Resource Request Form
To learn more about tissue resources or donations contact: email@example.com
Clinical Core Resources
The ADRC Clinical Core informed consent form states explicitly that data and/or tissue, cells, blood and other biofluids, and DNA samples will be shared, after review, with:
- National Alzheimer's Coordinating Center (NACC) - The NACC, directed by UW's Walter Kukull, coordinates data collection and fosters collaborative research among ADCs.
- National Cell Repository for Alzheimer’s Disease (NCRAD) - The Repository maintains a database of family histories and medical records and provides genetic researchers with cell lines and/or DNA samples.
- and other investigators
Contact: Suman Jayadev, firstname.lastname@example.org
Data Management & Statistics
The Data Management & Statistics (DMS) Core maintains a database of raw data collected by the Clinical Core and the Neuropathology & Targeted Testing Core, including APOE genotype status. The team upload clinical neuropathological and targeted genotyping data to the National Alzheimer's Coordinating Center and the Frontotemporal Lobar Degeneration (FTLD) module. They can provide statistical support for projects, cores, pilot projects and other users of ADRC resources, statistical consulting, and/or assistance with data analysis for different projects involving ADRC members, affiliates, and non-ADRC members at the University of Washington.
Contact: Ellen Wijsman, email@example.com
How to Access the ADRC Data Core Database
- For members of the UW ADRC only, contact the data manager: Will Affleck-Asch, firstname.lastname@example.org
For external researchers, contact NACC (https://www.alz.washington.edu/) for access to data from the UW ADRC.
Satellite Core (Data on Alzheimer’s disease (AD) and vascular brain injury in American Indian populations)
Little is known about Alzheimer’s disease (AD) and vascular brain injury in American Indian populations. Therefore, in collaboration with Partnerships for Native Health, the Satellite Core is conducting a pilot project on AD among participants of the Strong Heart Stroke Study in 3 major geographic regions of the US. The Satellite Core is now re-examining surviving participants using imaging, clinical, cognitive, and functional testing, augmented by measures related to AD – specifically the cognitive testing portions of the National Alzheimer’s Coordinating Center Uniform Data Set. The aim is to document longitudinal changes in MRI-defined brain structures and their relationship to cognitive or functional decline, and to establish normative and diagnostic standards and estimates of prevalence for probable AD and related dementias. This Satellite Core project offers an unparalleled opportunity to assess AD and its risk factors and consequences in an understudied population.
Specifics of the data include: demographics, socioeconomics, language use, alcohol and tobacco use, anthropometric and clinical examination including standard blood and urine labs, medication use, detailed family and personal medical history with focus on neurological and cardiovascular conditions, traumatic events and stress, depression, quality of life, electrocardiogram, short physical performance battery, finger tap, grip strength, activites of daily living, and several cognitive test batteries (Modified Mini Mental Status, Weschler Adult Intelligence Scale coding test, Controlled Oral Word Association, California Verbal Learning Test, Montreal Cognitive Assessment, Craft story, Benson figure, number span test, category fluency test, trail making test, Multilingual Naming Test), and 1.5T structural MRI (sagittal T1-weighted localizer, co-registered 5 mm axial-T1, 5 mm axial-T2, 5 mm axial-T2* susceptibility-weighted images in the anterior commissure/posterior commissure plane, 3 mm axial fluid-attenuated inversion recovery, and 1.5 mm sagittal T1-weighted volumetric gradient echo) with coding for infarcts, lacunar infarcts, hemorrhages, white matter hyperintensities and microvascular lesions, sulcal dilatation, ventricle enlargement, intracranial volume, white & grey matter volume, and hippocampus volume. Efforts are also underway to create 3-D brain maps with specificity for AD-affected volumetric measurements.
More details can be found at the following two study description manuscripts: Cranial magnetic resonance imaging (MRI) in elderly American Indians: Design, methods, and implementation of the Cerebrovascular Disease and its Consequences in American Indians Study and Findings of Vascular Brain Injury and Structural Loss from Cranial Magnetic Resonance Imaging (MRI) in Elderly American Indians: The Strong Heart Study
Due to tribal, community, and Indian Health Service partner agreements, the data from this project must remain separate from National Alzheimer’s Coordinating Center datasets. These data may be used for secondary data analysis, with degree of access (e.g. direct or indirect access) defined based on tribal and individual participant consents. Most investigators will be allowed indirect access, wherein Satellite Core analysts conduct statistical analysis under direction of the investigator. The process for project initiation involves proposal submission to Publications & Presentations Committee (timeline for review: typically 2 months after submission). Some projects require special tribal and/or study Steering Committee review, which may take longer. The paper writing process also requires tribal reviews for all completed, outgoing manuscripts before submission to a journal (timeline for review: typically 3-6 months after writing is completed). Payment structures for analyst time are defined on a project-by-project basis, as needed.
Investigators interested in working with these data should contact Satellite Core Project Lead, Dr. Astrid Suchy-Dicey, at email@example.com.
Adult Changes in Thought (ACT) Study
Since 1986, the longitudinal ACT Study has followed 5,000 aging participants from the community from age 65 and older, collecting information on health and cognitive function every 2 years. Some develop dementia, and some agree to donate their brains at the end of life. The ACT uses this extensive data resource to identify the environmental and genetic factors that increase the risk of brain disease and find ways to help communities delay or avoid dementia.
Contact: KatieRose Richmire, ACT Project Manager, Kaiser Permanente Washington Health Research Institute at: firstname.lastname@example.org
For questions about the ACT data query tool development, please contact: Erin Bowles, Research Associate, Kaiser Permanente Washington Health Research Institute at: email@example.com or 206-287-2708.
Transcriptomic characterization - The Aging, Dementia and TBI Study is a detailed neuropathologic, molecular and transcriptomic characterization of brains of control and TBI exposure cases from a unique aged population-based cohort from the Adult Changes in Thought (ACT) study. The open-access database was developed by a consortium consisting of the ADRC, Kaiser Permanente Washington Health Research Institute (formerly the Group Health Research Institute), and the Allen Institute for Brain Science.
Peptide structures and publications
In accordance with the ADRC Data Sharing Plan, all of the peptide structures and publications will be made publicly available through the Protein Data Bank and Open Access publication. All of the protein design tools and algorithms being developed in this ADRC program are distributed freely via Rosetta Commons (https://www.rosettacommons.org), where all software, including source code, is made publicly and freely available for academic use.
From Dr. Bhardwaj and Dr. Mulligan’s work (Bhardwaj et al. 2016), peptide structures have been deposited in the RCSB Protein Data Bank with accession codes 5JG9, 2ND2, 2ND3, 5JHI, 5JI4, 5KVN, 5KWO, 5KWP, 5KWX, 5KX2, 5KWZ, 5KX1 and 5KX0.
Model organisms generated by ADRC projects will be distributed freely or deposited into a repository/stock center such as the Caenorhabditis Genetics Center, either before or immediately after publication.
AMP-AD Knowledge Portal data
A project of Dr. Ben Logsdon, Director of Neurodegenerative Research at SageBionetworks, ADRC Affiliate Member
The distribution site for data, analysis results, analytical methodology and research tools generated through multiple National Institute of Aging supported programs. Currently this site supports the Accelerating Medicines Partnership-Alzheimer’s Disease (AMP-AD), the Molecular Mechanisms of the Vascular Etiology of Alzheimer’s Disease (M²OVE-AD) and the MODEL-AD Model Development and Evaluation for Late Onset AD programs. Data is available to qualified investigators and is updated periodically based on rapid data release timelines. See the Updates page for data announcements.