Recruitment
How are pts recruited for the study
Former SEABIRD participants and clinic referrals
What are the main components of the initial visit
Consent, MoCA, blood draw, CDR, survey
The proteins we look for in follow-up tests
tau and amyloid
What time slots do we schedule pts
M-10, 12, 1400
T-8, 10, 12, 1400
W-8, 10, 12, 1400
Th-8:30, 11, 13:3
Which group comes in person for Y3 visits
both groups, everyone comes for an in-person visit for Y3
What does a Study Partner need to complete before the first visit
ADLs (if not done by pt), AD8, FAQ
How much blood do we collect for former SEABIRD pts vs new clinic recruits
SEABIRD-60mL
Clinic-90mL
The diagnostic tests available through our study
Tau PET and an amyloid test (amyloid PET, blood test, or CSF)
How to we assign a temporary ID for a clinic referral
First initial, last initial, today's date (SB090426)
Where can follow up visits take place?
CTRU
CAM
ADRC
What does SUNBIRD stands for
Study to Understand Novel Biomarkers In Researching Dementia
What do all GUID's start with
NIH
What does DMT stands for
disease-modifying treatment
What are some true facts about study partners
They are preferred to be in person but can be over the phone
They should not have their own memory concerns
They should not be in the SUNBIRD study themselves (some exceptions made for SEABIRD)
What is unique about the flow of a Y3 visit?
The CDR is scheduled over the phone and the MoCA/blood draw is done in person
If a patient does not have transportation, what can we do
order an Uber if the pt lives within 1hr
may be able to order a taxi if >1hr away
What is the I-pad code
424017
a layer of white blood cells and platelets
When should a patient arrive to their visit to ensure being seen
no later than 15 minutes after start of appointment
Can pts get diagnostic testing in follow up years of study
If they have not yet received diagnostic testing through the study, are in group 1, and their in network provider orders it, yes, they can get diagnostic testing in Y3.
How long to schedule out if a pt has had a blood transfusion
3 months
Consent Tools score required to be able to consent for self
15-20 (13-14: decision based on professional judgement)
How much are pts paid for each part of the study
MoCA-$50
CDR-$50
Blood draw-$100
Tau PET-$200, amyloid test-$100
Where all do we document that a pt has been scheduled
Redcap contact log note
Date of blood draw at bottom of contact note
Redcap calendar
SUNBIRD spreadsheet
CARs
Outlook calendar
How much blood do we collect from a Y3 clinic referral pt
Trick question! It does not matter how they were recruited for Y3. We collect 90ml for Group 1 and collect 60ml for Group 2 pts.