The Biber Figure Learning Test (BFLT) is a serial figure learning assessment previously been shown to be sensitive to various biomarkers of the aging brain. BFLT is an extensive assessment requiring about 30 minutes for administration. In this study, we investigated BFLT’s associations with subjective cognitive decline (SCD), an early marker for preclinical Alzheimer’s Disease (AD), and examined whether alternative BFLT indices could be utilized to considerably shorten the length of assessment without decreasing its sensitivity to SCD.

Participants were 50 cognitively normal older adults (8% Hispanic, 92% Non-Hispanic; 78% White, 16% Black; 64% female; mean age =72.7 (SD =6.2); mean education =17.05 (SD =2.09)). SCD was measured using a 20-item age-anchored dichotomous questionnaire that assessed complaints of cognitive functioning, and the BFLT was administered in full. Pearson correlations were conducted between SCD and BFLT scores including: Trial 1 Learning (T1), Trials 1 to 2 Total Learning (T1T2), Trials 1 to 3 Total Learning (T1T3), Trials 1 to 5 Total Learning (Total Learning), Immediate Recall, Delayed Recall, Proactive Interference (Trial B – Trial 1), Retroactive Interference (Immediate Recall – Trial 5), and Total Discrimination (calculated as [Recognition Total Correct + 0.5]/16) − ([Total False Alarms + 0.5]/31]). A Fishers Exact Test was utilized to compare the correlational strength between SCD and each of the BFLT scores. Lastly, demographically adjusted (age, gender, and education) regression models were conducted to examine SCD as an individual predictor for the various BFLT scores.

SCD was negatively associated with BFLT T1 (r =-0.406, p =0.003), T1T2 (r =-0.331, p =0.019), T1T3 (r =-0.323, p =0.022), Total Learning (r =-0.283, p =0.046), Immediate Recall (r =-0.322, p =0.023), Delayed Recall (r =-0.318, p =0.025), and Retroactive Interference (r =-0.388, p =0.005) and positively associated with Proactive Interference (r =0.308, p =0.029). There was no significant difference in correlational strength between any of these BFLT scores and SCD. Adjusting for demographics, SCD predicted Immediate Recall (B =-0.273, p =0.029), Total Learning (B =- 0.253, p =0.040), T1 (B =-0.412, p =0.002), T1T2 (B =-0.326, p =0.010), T1T3 (B =-0.299, p =0.017), Proactive Interference (B =0.292, p =0.050), and Retroactive Interference (B =- 0.330, p =0.025).

Eight of the nine assessed BFLT scores were strongly correlated with age-anchored SCD and age-anchored SCD predicted seven of the nine assessed BFLT indices when adjusted for demographics. Although additional work is needed, these findings suggest SCD’s sensitivity to changes in visuospatial learning and memory, supporting its use as an early marker for preclinical AD. Likewise, our results suggest that an abbreviated version of the BFLT could be utilized that shortens testing time and reduces participant fatigue without a decrease in clinical relevance. Through ongoing longitudinal work, we hope to further disentangle the relationship between SCD and visuospatial learning and memory as measured through the BFTL and to examine how associations between SCD and the BFLT assessment change over time.

Subjective Cognitive Decline (SCD) is the self-reported experience of one’s own declining cognition prior to objective impairment on clinical neuropsychological testing. While SCD is a promising marker of preclinical Alzheimer’s disease (AD), information is needed to determine which cognitive complaints reflect typical aging versus prodromal degenerative disease. The objective of the current study was to examine the extent to which specific cognitive complaints were associated with two clinical outcomes including: 1) lower performance on cognitive tasks sensitive to preclinical AD; and 2) seeking help (i.e., medical attention) for cognitive difficulties.

The current sample consisted of 175 healthy older adults (56 Male, 119 Female), aged 51 to 90 (M=72.67, SD=7.12) with a mean education of 16 years (SD=2.3 years) who performed > -1.5 SD on clinical neuropsychological testing. 26.8% of the sample self-reported as race/ethnic minorities (e.g., Hispanic or Non-Hispanic, Black, Asian, Other.) Participants completed a 20-item SCD questionnaire assessing perceived cognitive difficulties in comparison to same aged peers, and tests shown to be sensitive to preclinical AD including the Face Name Associative Learning Test and the Loewenstein-Acevedo Scales for Semantic Interference and Learning. Participants were coded as having sought help for SCD (39%) if they entered the current study from a clinical referral source, OR if they entered through a non-clinical referral stream but indicated that they had previously seen a doctor specifically for memory concerns or spoken to their doctor about memory concerns. Chi square tests were used to examine relationships between SCD item endorsement and help-seeking; ANOVAs were used to the extent to which item endorsement was associated with performance on cognitive tests. Results were considered significant at p < .05.

Three SCD items were associated with both lower cognitive test scores and having sought help for SCD (p values ranged from < .001 to .02). Items included difficulty remembering the date or day of the week and remembering a few shopping items without a list. One non-memory item was also associated with both outcomes including difficulty thinking ahead. In contrast, six items were not related to either outcome of interest. Such items included difficulty remembering appointments, remembering where you put things like keys, following a map to a new location, doing two things at once, understanding what you read, or understanding what people say to you. The remaining eleven items explore the extent to which selective associations exist with either help-seeking or cognitive performance.

Patients and clinicians alike are often unsure about which cognitive difficulties are typical for aging and which may be the cause for further workup. Current results suggest that certain complaints among cognitively healthy older adults may be cause for more thorough evaluation or monitoring. These complaints include specific memory and nonmemory concerns. Future work is needed to determine if these complaints predict future cognitive decline or conversion to Mild Cognitive Impairment.

Subjective Cognitive Decline (SCD), the perception of deteriorating cognition in the absence of apparent impairment on objective testing, has gained momentum in recent literature as a risk marker for AD. Traditional neuropsychological assessments, while typically inclusive of a word list learning task, often do not include a comparable figure learning task. Growing evidence suggests that nonverbal assessments may be particularly sensitive to the earliest cognitive changes associated with Alzheimer’s disease. The Biber Figure Learning Test (BFLT), a visuospatial analogue to verbal list learning tasks, has been shown to associate with brain-based biomarkers of Alzheimer’s disease (AD; hippocampal volume, amyloid load). This study investigates the utility of the BFLT in capturing SCD above and beyond other cognitive measures sensitive to AD progression.

50 community-dwelling, cognitively normal individuals (78% White, 16% Black, 6% Other; 92% Non-Hispanic; 64% Female; Education M=17.1, SD=2.1; Age M=72.7, SD=6.2) participated in a study of SCD. All participants performed >-1.5 SD on clinical neuropsychological testing including a word list learning task. SCD was assessed using a 20-item scale querying individuals’ perception of difficulty across a range of memory and non-memory abilities in relation to others of the same age. Participants completed the BFLT, Loewenstein-Acevedo Scales of Semantic Interference and Learning (LASSI-L), Short-Term Memory Binding (STMB), and Face-Name Associative Memory Exam (FNAME), previously established as being sensitive to pre-clinical AD, were examined as predictors of SCD. A multiple regression adjusted for demographics (age, gender, education) was used to investigate the extent to which BFLT Trial 1 (T1) predicted SCD above and beyond these other cognitive measures sensitive to AD progression. Trial 1 of the BFLT was used based on a separate abstract examining which BFLT score was most highly associated with SCD (Kann et al., pending acceptance).

Adjusting for demographics, the present model accounts for 42% of the variance in SCD, while Biber T1 alone accounts for 20% and is the only significant individual predictor of SCD (β=-0.55, p=0.004). In contrast, other variables in the model independently accounted for less than 1% to 4% each (age β=-0.23, p=0.15; gender β=-0.15, p=0.34; education β=0.06, p=0.66; LASSI-L β=-0.11, p=0.55; STMB β=-0.03, p=0.85; FNAME β=-0.10, p=0.64).

The present study demonstrates the usefulness of the first learning trial of the BFLT as an independent predictor of SCD above and beyond other verbal and nonverbal measures sensitive to AD pathology. It also highlights the value of including even one trial of figure learning (< 5 minutes) in both clinical and research assessments seeking to capture cognitive changes which may be the earliest indicators of a neurodegenerative process. Ongoing longitudinal research is examining the predictive utility of the BFLT for future cognitive decline and transition to Mild Cognitive Impairment. Further research should explore the association between Biber T1, specifically, and neuropathological biomarkers of AD to further establish its utility as a portent of AD.

Research has indicated that racial and ethnic minoritized groups in the United States are disproportionately affected by dementia (e.g., Alzheimer’s disease), and seek help (HS) later in the disease course, if at all. It has also been posited that individuals from different ethno-racial groups have divergent perceptions of the aging process, which may influence HS. These disparities warrant tailored preventive efforts to encourage identification of factors which contribute to HS to enable earlier psychoeducation and enhanced access to resources. The factors which influence HS may differ across ethnoracial groups. Here we examine the relative influence of subjective cognitive decline (SCD), a risk factor for AD, and aging perceptions to HS in these groups.

The current sample consisted of 161 healthy older adults (51 Male, 110 Female), aged 51 to 92 (M=73.43, SD=6.85) with a mean education of 16 years (SD=2.3 years) who performed > -1.5 SD on clinical neuropsychological testing. 26.7% of the sample self-reported as race/ethnic minorities (e.g., Hispanic or Non-Hispanic African American, Asian, Other.) Participants completed a 20-item SCD questionnaire assessing perceived cognitive difficulties in comparison to same aged peers, in addition to measures assessing HS behavior, (e.g., Have you gone to the doctor specifically for memory concerns?), and aging perceptions (e.g., older adulthood group identification, explicit stereotypes, essentialism). Point biserial correlations examined relationships between SCD, HS and aging perceptions, and multinomial logistic regressions examined the contribution of SCD and aging perceptions to HS across majority (White) and minoritized groups (Non-White participants).

In bivariate analyses of the White participant group, HS was associated with SCD (r=0.43, p<0.001) and age group identification (r=0.27, p<0.01), and the latter were also associated (r=-0.19, p<0.05). The logistic regression model correctly classified 86% of participants (same as null), explaining a relatively small proportion of variance in HS, Snell R2 = 0.09, Nagelkerke’s R2 = 0.16. Age group identification was not associated with HS (b=-0.02, SE=0.26, p=0.94, 95% CI [0.59, 1.63] but SCD was (p=0.04). In the non-White group (n=42), bivariate analyses showed that HS was associated with essentialism (r=-0.41, p<0.01; belief aging as a fixed and inevitable process)) and explicit stereotypes (r=-0.42, p<0.01) but not with SCD (r=0.21, p=0.19). SCD was also associated with essentialism (p=-0.32, p<0.05), stereotypes (p=0.32, p<0.05), and age group identification (r=0.38, p<0.01). The regression model correctly classified 88.9% of participants (same as null); neither SCD (p=0.39), explicit stereotypes (p=0.43), essentialism (p=0.72), nor age group identification (p=0.62) contributed to HS when all were considered.

When both SCD and age perceptions are examined together as predictors of HS, SCD alone predicts HS in the majority group. Neither construct predicts HS in the minoritized group—despite significant bivariate associations between HS, aging perceptions and SCD that varied across ethno-racial groups. Findings illustrate that SCD and aging perceptions may contribute differently to HS across ethno-racial groups in the US, and as such may indicate different priorities when implementing HS tools (e.g., screeners for detection of cognitive impairment). Ongoing work is addressing illness perceptions, another key barrier in HS in these groups to further inform on tailoring of services.

An individual with dementia suffers from cognitive decline affecting not only memory but at least one of the other domains, such as personality, praxis, abstract thought, language, executive functioning, attention, and social skills. Further, the severity of the decline must be significant enough to interfere with daily functions. It is currently unknown whether any of the causes of dementia can be cured. Many challenges confront patients and their families, including a lack of knowledge about dementia and associated treatments; therefore, it is essential to study illness perception regarding dementia-related symptoms in order to improve psychoeducation and lower barriers to seeking assistance. How individuals perceive and make sense of early dementia symptoms can significantly impact their help-seeking behaviors (HS). Exploring illness-perception regarding dementia-related symptoms may contribute to the development of strategies for increasing HS, early diagnosis, and intervention. The objective of this study is to describe aspects of illness perception in cognitively healthy older adults and examine potential correlations with demographic variables, including age, gender, and education.

The cohort comprised 55 cognitively healthy older adults enrolled in a study examining Subjective Cognitive Decline. All participants performed > -1.5 SD on clinical neuropsychological testing. Participants were 70% female and 30% male; and self-identified as White = 78%, Black = 16%, Asian = 2%, Other = 4% and Non-Hispanic = 98%. Participants read a short vignette describing a person experiencing significant memory issues representative of an individual with mild dementia and answered seven follow-up questions regarding the cause of memory problems, the likely course of memory problems, and potential treatments for memory problems. Chi-square analyses examined the endorsement of items in relation to age, gender, and education.

When asked about the likely cause of memory problems, 65% of participants endorsed neurologic disease, 53% of participants endorsed normal aging, 26% endorsed stress, 25% endorsed genes, 4% endorsed fate/luck, and 16% endorsed "Don't know" for likely cause of symptoms. 64% of participants responded "will get worse", 18% "will go up and down", 16% "Don't know", and 2% "Other" in response to the progression of memory problems over time. For "Can he do anything to help [memory problems]?", only 2% responded "No" while 76% responded "Yes" and 22% endorsed "Don't know". On a follow-up question regarding ways an individual could improve his cognitive difficulties, 78% "Social Engagement", 73% "Exercise", 64% endorsed "Medication", 48% "Diet", 42% Psychological Treatment", 29% "Rehabilitation", 9%" Don't know" and 15% "Other." Lastly, 58% of participants reported "Independence", 33% "Identity," 4% "Friends," 4% "Respect," and 1% "Don't know" for things he may risk losing due to memory problems. Age, gender, and education were not associated with any of the above responses (p > .05).

Older adults demonstrate a range of ideas about the cause, course, and potential treatment for memory disorders. Understanding how and what factors impact illness perception is a pivotal step in improving illness perception and ultimately narrowing the gap in health disparities and HS. Further work in a large demographically representative sample is needed on illness perception and how socioeconomic factors, ethnicity, and other mediators interact with its impact on HS for dementia-related symptoms.

The COVID-19 pandemic presented a challenge to established seed grant funding mechanisms aimed at fostering collaboration in child health research between investigators at the University of Minnesota (UMN) and Children’s Hospitals and Clinics of Minnesota (Children’s MN). We created a “rapid response,” small grant program to catalyze collaborations in child health COVID-19 research. In this paper, we describe the projects funded by this mechanism and metrics of their success.

Using seed funds from the UMN Clinical and Translational Science Institute, the UMN Medical School Department of Pediatrics, and the Children’s Minnesota Research Institute, a rapid response request for applications (RFAs) was issued based on the stipulations that the proposal had to: 1) consist of a clear, synergistic partnership between co-PIs from the academic and community settings; and 2) that the proposal addressed an area of knowledge deficit relevant to child health engendered by the COVID-19 pandemic.

Grant applications submitted in response to this RFA segregated into three categories: family fragility and disruption exacerbated by COVID-19; knowledge gaps about COVID-19 disease in children; and optimizing pediatric care in the setting of COVID-19 pandemic restrictions. A series of virtual workshops presented research results to the pediatric community. Several manuscripts and extramural funding awards underscored the success of the program.

A “rapid response” seed funding mechanism enabled nascent academic-community research partnerships during the COVID-19 pandemic. In the context of the rapidly evolving landscape of COVID-19, flexible seed grant programs can be useful in addressing unmet needs in pediatric health.

Spinal muscular atrophy (SMA) is a devastating rare disease that affects individuals regardless of ethnicity, gender, and age. The first-approved disease-modifying therapy for SMA, nusinursen, was approved by Health Canada, as well as by American and European regulatory agencies following positive clinical trial outcomes. The trials were conducted in a narrow pediatric population defined by age, severity, and genotype. Broad approval of therapy necessitates close follow-up of potential rare adverse events and effectiveness in the larger real-world population.

The Canadian Neuromuscular Disease Registry (CNDR) undertook an iterative multi-stakeholder process to expand the existing SMA dataset to capture items relevant to patient outcomes in a post-marketing environment. The CNDR SMA expanded registry is a longitudinal, prospective, observational study of patients with SMA in Canada designed to evaluate the safety and effectiveness of novel therapies and provide practical information unattainable in trials.

The consensus expanded dataset includes items that address therapy effectiveness and safety and is collected in a multicenter, prospective, observational study, including SMA patients regardless of therapeutic status. The expanded dataset is aligned with global datasets to facilitate collaboration. Additionally, consensus dataset development aimed to standardize appropriate outcome measures across the network and broader Canadian community. Prospective outcome studies, data use, and analyses are independent of the funding partner.

Prospective outcome data collected will provide results on safety and effectiveness in a post-therapy approval era. These data are essential to inform improvements in care and access to therapy for all SMA patients.