One challenge for new research coordinators is that the Memory and Aging Center is a huge institution with its own specific culture and organization, partly just reflecting the broader norms of academic medicine. There is a lot of helpful information on MACipedia, the MAC wiki. Still, it can be tricky to figure out how all these pieces fit together, particularly given all the three-letter acronyms in use, so here is a brief orientation:
In 2016, a large donation prompted a reorganization of the clinical and bench neurosciences at UCSF, under the broad umbrella of the Weill Institute for Neurosciences. This new institute, directed by Dr. Stephen Hauser, now includes:
- The Department of Neurology
- The Department of Neurological Surgery
- The Department of Psychiatry
- The Institute for Neurodegenerative Diseases
- The Neuroscience Graduate Program
The MAC is part of the Department of Neurology, chaired by Dr. Andy Josephson. It’s one of several different divisions; other divisions that we work with a lot (particularly in the Neurotech project) are Movement Disorder/Neuromodulation and Epilepsy.
Our lab is part of the research program at the MAC, but when most people in the community think of the MAC, they’re usually thinking of the MAC Clinic. The clinic is located on the 2nd floor of 1651 4th Street, and provides neurological care for patients with cognitive disorders. I usually see my clinic patients on alternating Tuesday mornings and Wednesday afternoons. In the past I was able to have coordinators “shadow” me during in-person clinics (which for me right now are the 3rd Tuesday mornings of each month), but right now observers are on hold. Will check in on this later. Currently my other clinics are just over Zoom; we’ll see in the coming months how many of our patients and caregivers are eager to come back in person.
MAC research appointments principally take place in the Neurosciences Clinical Research Unit in the Sandler Neurosciences Center at 675 Nelson Rising Lane. Patients as well as healthy control participants volunteer for studies to help understand the neurobiology of dementia and aging–this can include clinical trials, observational studies, neuroimaging (fMRI, structural MRI, PET, MEG), and sampling of blood and cerebrospinal fluid. Generally we anticipate that people who volunteer for studies will be comfortable with having observers, and family conferences (see below) can be valuable learning opportunities for staff; note that research participants can always decline observation by staff who aren’t directly involved in their research visit.
Some patients are seen in MAC clinic and are participants in MAC research (often being referred from clinic to the research program, if they’re interested); some patients are only seen in MAC clinic and not in research (e.g., if they don’t meet inclusion criteria for our studies or aren’t interested in participating); some patients (particularly with rare conditions who are recruited from other states or regions) are only seen in research; and generally our healthy control participants are seen in research only.
Many of our research participants are recruited through the MAC’s longitudinal “parent projects.” These are multi-year, longitudinal research projects that follow different clinical cohorts of research participants over time. Our lab, like many others at the MAC, runs “subprojects” for which participants in the parent projects are screened and referred.
Principally, we work with three of these parent projects:
- “PPG” (Frontotemporal Dementia: Genes, Images and Emotions program project grant)
This project recruits patients with different variants of frontotemporal dementia (FTD), as well as related conditions such as corticobasal syndrome (CBS), progressive supranuclear palsy (PSP), and amyotrophic lateral sclerosis (ALS).
- ALLFTD (formerly ARTFL/LEFFTDS)
This is a collaborative network of research centers throughout the US and Canada that see patients with frontotemporal dementia and related disorders. Part of ALLFTD focuses on familial forms of FTD, including studies of people who have genes for FTD and of their family members. Many of our participants are co-enrolled in PPG and ALLFTD, and some of the assessments they undergo are ALLFTD assessments that are common across the various ALLFTD sites.
- ALLFTD (formerly ARTFL/LEFFTDS)
- ADRC (Alzheimer’s Disease Research Center)
This project recruits patients with Alzheimer’s disease, including a subgroup for:
- EOAD (Early-Onset Alzheimer’s Disease) - people diagnosed with Alzheimer’s Disease before the age of 65, as distinct from Late-Onset Alzheimer’s Disease (LOAD), the more typical form.
- Hillblom Healthy Aging Network
This project recruits healthy older adults, as determined through neuropsychological and neurocognitive assessments, for studies of regular aging. At times you’ll hear us discuss subgroups of Hillblom, which involve added assessments such as MRI:
Our lab’s four main projects are linked to these parent projects. They are:
- Decision-Making in Alzheimer’s and Related Dementias (DMA)
This project studies decisional impairments in different subtypes of dementia. We recruit participants with bvFTD and svPPA from the PPG, participants with Alzheimer’s disease from the ADRC, and healthy control participants from the Hillblom project.
- Genes, Brains and Decisions (GBD)
In this study, we are investigating the hypothesis that decision-making problems are a very early sign of FTD, potentially preceding a formal disease diagnosis. To examine this, we’re comparing presymptomatic mutation carriers of genes for familial FTD with their noncarrier family members, recruited through ALLFTD both at UCSF and at other sites in the ALLFTD network.
- Neuroethics in Novel Neurotechnologies (Neurotech)
This study does not recruit directly from the MAC parent projects, as it’s focused on ethical implications of implanted neurotechnology in patients with epilepsy, mood and movement disorders. This project is co-led by Professor Dan Dohan of the UCSF Institute for Health Policy Studies.
- Online Studies of Decision-Making in Healthy Aging
These studies use an online panel of healthy older adults recruited through the Hillblom Healthy Aging Network.
- Standard Operating Procedures on the R: drive: R:\groups\chiong\aging-and-cognition\.
One of the great advantages of working at an academic institution like UCSF is our access to a multitude of learning opportunities such as lectures, didactics, conferences given by world-renowned experts. A calendar including some of these events is maintained at calendar.ucsf.edu/group/memory_and_aging_center; opportunities include:
- Tuesday talks
Every Tuesday from 4-5pm (currently on Zoom) Usually informal talks given by MAC faculty/staff on a variety of topics and projects.
- MAC Grand Rounds
Every Friday from 9-10am (mostly now on Zoom, some hybrid)
Weekly lectures, usually more formal than Tuesdays, often featuring visiting scholars or other special guests.
- MAC didactics
A two-week didactic series at the beginning of each month covering foundational topics in dementia and aging, taught by MAC faculty. These are intended for visiting students, rotating medical students/interns, fellows and new MAC staff members.
- Clinical-Pathological Case Conferences (CPCs)
Typically about once a month on Tuesdays (in place of Tuesday lectures) from 3-5pm
This is a dynamic and interactive experience where MAC fellows first present an interesting/unique patient case, complete with family history, social context, and clinical examination/neuropsychological findings. MAC faculty and staff are encouraged to ask questions and discuss potential diagnoses for the patient. Cases conclude with an overview of the presentation, neuroimaging, and key findings from autopsy.
- PPG family conferences
Typically on Tuesdays 2-4pm and Wednesdays 3-5pm (check MAC Family Conference Calendar)
case conferences where clinicians discuss a patient’s diagnosis based on neurological, behavioral, and cognitive data. In the first hour, the neurology fellow and neuropsycholgist (see Who’s who at the MAC, below) will present to the attending details of the patient’s background, symptoms, family/social history, physical examination, and neuropsychological testing. In the second hour, the patients and family/caregiver are invited to speak with the team, ask questions, and formulate a plan going forward. Usually held at the end of each patient’s research visit.
In addition to these MAC-wide opportunities, our lab hosts other learning experiences:
- Lab didactics and journal club
Second hour (if there is one) of lab meeting
Usually in the fall we have a series of 7-8 didactics tailored to our lab’s specific research interests, methods and practices, with the aim of establishing common understanding across different new lab members with various backgrounds and interests. After completing this series, we’ll have a journal club: lab members will prepare a brief presentation on a journal article of interest to them, connected to our lab’s current research projects. Another great use for this time is to present work in progress, such as a manuscript or poster that someone is working on. Some weeks we’ll skip if I have a conflicting clinic or committee meeting.
- Code meeting
Thursdays 9-10am (working hour) & 11am-noon (with Winston)
Regular meetings to discuss issues in code. First hour is for people to gather with Clara to discuss code they’re working on and to work out issues together. Second hour is presenting work and questions to Winston.
- Mentoring meetings
Wednedsays from 10-10:30am
Rotates across lab members from week to week; designated time to discuss job performance, team issues/concerns, career opportunities, applications to grad/professional schools, or other topics important to you.
Finally, technically not within our lab or MAC, but several people in our lab are helping to organize events through UCSF Bioethics:
- Clinical ethics journal club (details at tiny.ucsf.edu/ClinEthicsJC)
4th Thursdays of each month from 4-5pm
A meeting aimed at clinicians in the 5 UCSF-affiliated Bay Area hospitals, to discuss a recent paper relevant to the ethics of clinical practice and research. Currently run in hybrid format, with these physical locations:
- BCH Oakland: Bertha Wright Conference Room
- BCH SF (Mission Bay): BCH 3rd Floor ICN room (C3810A)
- SFGH: 5K8
- SFVA: GPEC conference room (Building 1, Floor 3)
- UCSF Med Center (Parnassus): M169 (next to Case Management/Social Work behind ‘M’ elevator bay)
- Research series (details at tiny.ucsf.edu/BioethicsRS)
3rd Thurdays of most months from 3:30-5pm
A meeting directed at the UCSF bioethics research community, to discuss things like methods, funding opportunities, and in-depth explorations of selected topics.
- Grand Rounds (scheduling variable)
These will be meetings coordinated with other clinical departments or research institutes at UCSF, to address ethical and societal questions arising in these specific domains.
You’ll be interacting with a lot of different people in different roles. Not comprehensive, but here are some of the titles people will have and how they’re related:
- The boss
Dr. Bruce Miller, MD, behavioral neurologist and Director of the MAC
This is a medical education term for the supervising physician on a clinical team. These are MDs who’ve completed training in a clinical specialty (mostly behavioral neurology, though Victor Valcour is a geriatrician and Mary De May is a psychiatrist); they’re responsible for the fellows’ and/or any students’ work in research and clinical visits. All are faculty; some are also researchers who run their own labs/research programs, while some are purely clinical faculty based in 1500 Owens.
- Neuropsychology faculty
Psychologists (PhDs or PsyDs, distinct from MD-psychiatrists) with expertise in neuropsychological testing, who’ve completed training. Some are researchers who run their own labs/research programs, while some are purely clinical faculty based in 1500 Owens.
- Nurses, social workers, genetic counselors
I’d encourage getting to know these other clinicians–some are based in the research program, and others are based in the clinic at 1500 Owens. They’re great resources for understanding clinical issues, practical tools, community resources, and patient/family concerns.
- BNTP fellows
Mostly US-trained MDs who’ve completed medical school and residency training (usually in neurology, sometimes in geriatrics, psychiatry or other fields) and are pursuing further training in behavioral neurology. You’ll see them presenting at PPG/ADRC case conferences and at CPCs.
- GBHI fellows
An international cohort of scholars from various disciplines and many different countries, hosted at UCSF and Trinity College Dublin. Some who have clinical (MD or neuropsychology) backgrounds will occupy clinical research roles analogous to BNTP fellows or neuropsychology trainees.
- Neuropsychology trainees
People who either have finished their clinical doctorate (PhD or PsyD), or are in the clinical training portion of their doctorate, involved in neuropsychological testing of clinic patients and research participants.
Researchers who have completed graduate-level doctoral (usually PhD) training, engaged in research here usually for between 2-4 years before seeking a permanent academic or industry research position.
- Research coordinators
Most of you–research staff engaged in documentation, participant recruitment/tracking, administering tasks/measures, and many other things necessary to keep the place running. One of the great strengths of the MAC is its robust RC community, with many people who are preparing to go to graduate or professional schools, or are deliberating about next steps in their careers.