Using ADRC and Related Resources

Welcome to the University of Washington Alzheimer’s Disease Research Center and Related Resources

The NIH-funded UW Alzheimer’s Disease Research Center exists to be a regional research resource for investigation of Alzheimer’s disease and Alzheimer's disease related dementias (AD/ADRD). We support, or are affiliated with, all major areas of AD/ADRD research – including basic and translation science, clinical and population/epidemiological research, big data and animal models. Over 35 years of continuous NIH funding, we have developed and characterized a vast array of clinical, genetic and imaging data as well as banked tissue and biofluid samples (de-identified) that we are funded to share with UW, regional, and national investigators. We are a collaborative network of 40+ directly funded researchers and ADRC-affiliated faculty. An ADRC Research Navigator is available to help researchers, especially those new to the ADRD field, effectively utilize these rich resources and expertise.

 

For more information on ADRC resources, we encourage you to avail yourself of the Research Navigator Annika Noreen, PhD: annikn@uw.edu, as well as the direct links in each section for specific inquiries.

 

1. FINDING PARTICIPANTS FOR YOUR OWN STUDY

UW ADRC Research Registry

The ADRC maintains a continually updated, comprehensive contact list of >450 individuals (as of August 2019) who have signed an IRB-approved consent form to be contacted about participation in ADRD research studies. Many of these potential participants have been evaluated at the Memory and Brain Wellness Center (MBWC) clinic and hence have a recent, reliable clinical diagnosis. All have expressed willingness to be part of AD/ADRD research, and can be contacted for participation in ADRD studies. Sample diagnoses include: dementia due to Alzheimer’s disease, dementia due to Lewy Body disease, Frontotemporal Dementia, Mild Cognitive Impairment, Subjective Cognitive Concerns.

The Registry is ideal for investigators who require a fairly limited scope of information for study recruitment.

Access: UW Investigators with an IRB-approved study can obtain a list of potential research participants from the ADRC Registry.  Note that investigators will be required to track and report which Registry participants were contacted and who was enrolled.

Studies with the IRB-approval to do so may also request to have their study informational materials displayed in ADRC and Memory Brain and Wellness Clinic spaces at Harborview Medical Center.

Inquiries: Theresa Kehne, ADRC Research Coordinator, therek3@uw.edu

 

ADRC Clinical Core Longitudinal Study (Clinical Cohort)

The ADRC maintains its own longitudinal research cohort of approximately 350 extensively characterized participants, most of whom can be recruited into other studies, and/or whose data and biosamples (de-identified)  can be used in research studies. There are three key ways this cohort can be leveraged.

  1. Many Clinical Core participants can be referred and co-enrolled in other studies to take advantage of the rich phenotyping they have undergone that might otherwise prove too expensive or time-consuming to collect. The Clinical Core conducts a yearly visit with a physical exam and neuropsychological testing, and collects detailed medical history and demographic information. Every participant has a co-participant, ie someone close to the participant who can provide independent information about the participant’s cognitive abilities and daily functioning. Additionally, we collect genetic information (especially APOE allele status) for most participants, and a subset have additional genetic screening and neuroimaging data (MRI). We currently have amyloid/tau/neurodegeneration (A/T/N) biomarker characterization for a subset of subjects, and this number will increase over time. Over 50% of the Clinical Core cohort have agreed to brain autopsy.
  2. Investigators can request biofluids and/or tissue samples from (de-identified) Clinical Core participants, together with their linked phenotypic data (see section #2 below).
  3. Investigators can mine existing data (de-identified)  on research diagnosis, cognitive, genetic, biomarker and/or imaging data on the Clinical Core Cohort (see section #3 below). 

Access: Investigators with an IRB-approved study can work with the Clinical Core Lead, Dr. Suman Jayadev, to identify appropriate participants for enrollment in other studies.

Inquiries: Dr. Annika Noreen, PhD, ADRC Research Navigator, annikn@uw.edu

 

2. OBTAINING TISSUES AND BIOFLUIDS; USING CELL LINES

The ADRC maintains an extensive biorepository of tissues, samples, and fluids from the Clinical Core Cohort (de-identified), as well as many other studies . Most samples have rich, linked (de-identified) data collected during their research study participation. Samples include plasma, serum and other blood products (>1500 indiv.); DNA (>1200 indiv.); CSF (>500 indiv.); dermal fibroblasts (>3000 indiv.); frozen (>1300 indiv.) and fixed (>3500 indiv.) brain tissue.

Access: Any investigator with an IRB-approved study. A Material Transfer Agreement (MTA) will be needed if you are an investigator outside of the UW.

Inquiries about brain tissue: Dr. Erica Melief, PhD, ADRC Neuropathology lab, emelief@uw.edu

Inquiries about other biofluids: Dr. Annika Noreen, PhD, ADRC Research Navigator, annikn@uw.edu

Once ready to request brain tissues or biosamples, please use online request form: https://docs.google.com/forms/d/1ht1VDvhYjqDgOT11t8otpO0w6xTIZX-PV7dGq6OcEBo/viewform?edit_requested=true

We also have induced pluripotent stem cell (iPSC) lines from 11 Clinical Core participants (de-identified) that can be leveraged for other studies. We strongly encourage the development and use of iPSCs in mechanistic and biological experiments, and will provide consultation and navigation around using iPSCs in your research proposals.

Inquiries about iPSCs: Dr. Jessica Young, PhD, Stem Cell component Lead, jeyoung@uw.edu

 

3. MINING EXISTING HUMAN SUBJECTS DATA

Local UW ADRC database

The Central ADRC database combines and collapses multiple types of data from the 35+ year data collection history of the ADRC. There is a user-friendly web interface which allows the availability of data and samples (de-identified) to be queried in order to determine feasibility of projects. Data collected at each visit in the Clinical Core longitudinal study, and the resulting linked autopsies, are in this database as well as the national ADRC database (see NACC, below). Additionally, one of the unique strengths of our local database is the extensive and deep familial AD/neurogenetics data that have been collected since 1985. We have >30,000 individuals with varying depth of data types in our local database.

A key function of this database is to determine if enough individuals exist among locally available samples or datasets (often in addition to those sent on to NACC – see below) to support a specific study. 

Access: Upon request to UW investigators, with training by the ADRC Research Navigator. Use beyond identifying what data and/or samples are available – that is, obtaining and using data in analyses – will likely require consultation with our Data Management and Statistics Core (see section #4).

Inquiries: Dr. Annika Noreen, PhD, ADRC Research Navigator, annikn@uw.edu

 

National Database of the Alzheimer’s Disease Research Centers (NACC)

The UW ADRC is one of 30 national Centers that submit standardized data to a national database - the National Alzheimer’s Coordinating Center (NACC) on living Clinical Core participants, and neuropathological information for those participants who come to autopsy. There are currently >15,000 living individuals in the database being continually followed, and ~6,000 individuals with both clinical data and autopsy data (see additional linked biofluid samples in the NCRAD section below). You can freely explore the query page, and, on request, get one-on-one help from NACC in creating a custom file with specific variables.

 

This database is excellent for analyses that require very large sample sizes and little missing data. Most years, NACC will make a call to fund projects under the “New Investigator Awards”.

 

Access: All data is freely available online, with a data use agreement needed for publications.

Description of the datasets: https://www.alz.washington.edu/WEB/data_descript.html

Description of the study population: https://www.alz.washington.edu/WEB/study_pop.html

The query page: https://www.alz.washington.edu/WEB/naccquery.html

 

Repository: Linked imaging, cognitive, and clinical/demographics of MBWC clinic patients (de-identified)

The UW ADRC has developed and manages a linked imaging, cognitive, and clinical/demographics Repository of approximately 500 de-identified MBWC clinic patients. It is a static “snapshot” of the patient’s cognitive status and clinical information, centered around the time of the diagnostic MRI. The imaging arm comprises 24 abstracted variables from a research-grade structural MRI, such as total grey matter/white matter volume, hippocampal volume, and every lobe’s cortical thickness for both left and right hemispheres. The cognitive arm is data from the Montreal Cognitive Assessment (MoCA) © scored both as it was in the clinic, and re-scored as needed under research standards. Finally, there is detailed clinical information such as etiologic diagnosis and syndrome severity; additional aspects captured include years of education and performance on activities of daily living.

Access: Upon request to investigators who sign a data sharing agreement, with some training around its use by the ADRC Research Navigator.

Inquiries: Dr. Annika Noreen, PhD, ADRC Research Navigator, annikn@uw.edu

 

Native American datasets from the ADRC Satellite Core (de-identified)

The UW ADRC Satellite Core, conducted by Washington State University’s Partnerships for Native Health (P4NH), followed up rural American Indians from the Strong Heart Study, with cognitive, physical functioning, psychosocial and clinical measures, and brain MRI scans. This has built an epidemiologic data set with longitudinal cognitive measures and imaging in 450 elder Native Americans.

 

Access: Through Washington State University’s Partnerships for Native Health.

Inquiries: Dr. Dedra Buchwald, MD, Satellite Core Lead, dedra.buchwald@wsu.edu.

 

4. DESIGNING YOUR STUDY

Statistical Consults

The Data Management and Statistics Core provides consults ideally prior to study initiation, to maximize feasibility of study and interpretation of data. In some cases, the consult will follow through to the data analysis and publication stages.

Access: Studies driven by ADRC-affiliated investigators or any study proposing to utilize UW ADRC resources have priority.  Other interested investigators are encouraged contact the Research Navigator and/or the Data Management and Statistics (DMS) Core Lead for assistance.

Inquiries: Dr. Ellen Wijsman, PhD, DMS Core Lead, wijsman@uw.edu, or Dr. Annika Noreen, PhD, ADRC Research Navigator, annikn@uw.edu

 

Neuropsychometric Consults

Research participants have memory and cognition characterized with standard screening tests and domain-specific neuropsychological tests.  Cognitive test batteries may vary from study to study.  Expertise in harmonizing measures across studies, and advice on which specialized tests could be used to capture particular cognitive domains, are available through the Psychometrics component of the Clinical Core.

Access: Studies proposing to use ADRC data sets (e.g. Clinical Core, Satellite Core) or leveraging existing ADRC participant cohorts.

Inquiries: Dr. Paul K. Crane, MD, Psychometrics component Lead, pcrane@uw.edu

 

Stem Cell Consults

We provide consults around using induced pluripotent stem cells (iPSCs); please see section #2

 

5. OTHER AFFILIATED RESOURCES

Adult Changes in Thought Study

Adult Changes in Thought (ACT) study is a longitudinal population-based prospective cohort study of brain aging and incident dementia in the Seattle metropolitan area. ACT invites a random subset of Kaiser Permanente HMO subscribers who 65 years old and nondemented, and maintains 2000 participants. Participants are seen every two years. Strengths include deep links to the Kaiser electronic medical record, including comprehensive medication history, and a vigorous autopsy program. Autopsies are conducted by the same Neuropathology team, and under the same protocols, as the Clinical Core Cohort decedents, increasing the pool of potential matched tissues. The ACT study, which has been continuously in operation since 1986, is the longest-running study of its kind and now includes one of the largest populations of extremely old people (> 85 yrs) with ongoing prospective data collection. The ACT cohort study has, to date, enrolled more than 5,000 individuals at Kaiser Permanente Washington Health Research Institute. As of August 2019, more than 820 ACT participants have had brain autopsies.

ACT data are derived from a community cohort and can be used to address population-level questions. ACT also has richly characterized, very old (>85 yrs) cognitively intact individuals who come to autopsy: these tissues are vital to investigate questions around the biological basis of resilience and resistance.

ACT Data Query Tool: http://act.kpwashingtonresearch.org/dqt/

Inquiries: KatieRose Richmire, ACT Project Manager, Katierose.Richmire@kp.org

 

National Centralized Repository for AD (NCRAD)

NCRAD is a national repository for samples collected at ADCs as well as many other AD/ADRD-related studies. Many cell types are stored at NCRAD, including blood, DNA and brain tissue, with iPSC storage just starting up.  NCRAD is closely partnered with the Alzheimer Disease Centers Program and is a source of well-characterized biofluids and other tissues for interested ADRD investigators.

https://ncrad.iu.edu/index.html

Inquiries: Dr. Annika Noreen, PhD, ADRC Research Navigator, annikn@uw.edu

 

Sage Bionetworks

Sage Bionetworks collaborates with ADRC faculty to bring open science and big data solutions to AD/ADRD studies. Gaining insight and experience in “big data” approaches is a key element in the Research Education Component (see below).

https://sagebionetworks.org/

Inquiries: Dr. Annika Noreen, PhD, ADRC Research Navigator, annikn@uw.edu

 

Model organisms of ADRD

The ADRC does not directly fund infrastructure for model organisms for ADRD, although several ADRC and affiliated faculty do work on animal models of ADRD in their own labs. ADRC and affiliated faculty expertise is concentrated in mouse models and C. elegans.

Inquires around collaboration with animal model labs: Dr. Annika Noreen, PhD, ADRC Research Navigator, annikn@uw.edu

 

6. EDUCATIONAL OPPORTUNITIES

The ADRC has a newly developed Research Education Component (REC) starting in 2020 that provides training and mentorship to clinical and basic science researchers entering the ADRD research space. REC activities include hosting lecture series on the basics of ADRD, training in the use of UW ADRC resources, an annual ADRD symposium and the development of an annual Open Neuroscience Workshop. Most of these resources will be live-streamed via ZOOM for remote access by trainees and investigators. A UW ADRC REC web interface is currently in development.

Inquiries: Dr. Annika Noreen, PhD, ADRC Research Navigator, annikn@uw.edu

 

7. FUNDING OPPORTUNITIES

For updates on funding opportunities, join our email list to recieve our monthly newsletter, which contains a section 'Notes for Researchers.'

The UW ADRC will make a call for Development Projects every year around the fall, for one-year projects of up to $50,000 direct cost budgets. We aim to fund 3-4 per year, with 2-3 being reserved for junior investigators (from postdoc to Assistant Professor).  The 2020-2021 Development Projects RFA deadline has passed.