Many men age 50+ with HIV (MWH age 50+) are sexually active. However, little is known about the relationship between the number of sexual partners and patient-reported outcomes in this population. To help address this need, analyses were performed on data from the Aging with Dignity, Health, Optimism and Community cohort, an observational study of adults age 50+ with HIV. Of 876 MWH age 50+, 26.8% had 0 sexual partners in the past year, 27.9% had 1, 21.5% had 2-5, and 23.9% had >5. Men with one partner were significantly less lonely and less depressed than any other group (p < .01 for pairwise comparisons). Men with zero partners were more depressed than any other group. Linear regression controlling for race and relationship status showed men with one partner had lower levels of loneliness than any other group. They also had lower levels of depression than men with zero or more than than five sexual partners, although depression levels were not significantly different for men with one or with two to five partners. Linear regression also showed that men in relationships were less lonely and less depressed than men who were not in relationships, after controlling for race and number of sexual partners. Better understanding of the roles that number of sex partners and relationships play in the mental health of MWH age 50+ may help ameliorate the burden of loneliness and depression in this vulnerable population. ClinicalTrials.gov (Identifier: NCT04311554).

Background: Older people living with HIV (PLWH) often experience elevated levels of depression, anxiety, and loneliness.Methods: This waitlist-controlled trial examined the effectiveness of online audio mindfulness lessons in impacting these feelings among older PLWH.Results: Among 214 participants, the mean (SD) age was 60.4 (5.9) years, 89% were male, and 69% were white. After 25 days, the intervention group showed significant improvements versus the waitlist control group in symptoms of depression (20.3% improvement, p < .01) and symptoms of anxiety (22.4% improvement, p = .03), but not in loneliness as measured by a Daily Diary (12.9% improvement, p = .07) or the 3-Item Loneliness Scale (4.8% improvement, p = .27). Secondary analyses among participants with elevated baseline symptoms of depression showed a 26.3% improvement (p < .01), with a moderate effect size (Hedge's g = 0.69). Similarly, those with elevated baseline symptoms of anxiety showed a 25.6% improvement (p < .01), a moderate effect size (g = 0.54), while those with moderate or severely elevated loneliness showed an 18.9% improvement in daily loneliness (p < .01), a moderate effect size (g = 0.55).Conclusion: This waitlist-controlled trial is the first to show that a series of brief, online audio mindfulness lessons improves mental health outcomes among older PLWH. For many patients, this intervention may offer relief that is both accessible and affordable.

Resilience, a measure of stress coping ability, may be important in helping older people (age 50+) living with HIV (PLWH) age successfully, but limited data exist regarding factors that contribute to resilience for this group. This study uses the Connor–Davidson Resilience Scale 2 (CD-RISC2) to assess resilience, based on a cross-sectional analysis of 1047 older PLWH. Bivariate linear regression models were used to identify predictor variables that had a relationship with resilience. Those variables were then included in a multivariable linear regression model, which was pared using backward selection. In the multivariable model, higher income and greater interpersonal support were associated with greater resilience, whereas depression and anxiety were associated with lower resilience. Relevant interventions that address these issues, such as increasing opportunities for social support and increasing screening for and treatment of depression and anxiety, are identified as potential pathways to increase resilience among older PLWH.

Abstract Background Many older (age 50+) adults living with HIV (OALWH) are sexually active. However, little is known about the relationship between number of sexual partners and mental health outcomes among OALWH. Methods Data were utilized from the Aging with Dignity, Health, Optimism and Community (ADHOC) cohort, an observational study of OALWH from ten US clinics. To measure sexual activity, participants were asked “How many sexual partners have you had in the last year?” with response options ranging from zero to “greater than five.” Loneliness was measured using the Three-item Loneliness Scale, and depression was measured using the Patient Health Questionnaire-2. Significance was determined by Kruskal-Wallis tests followed by unadjusted pairwise comparisons. Results Of 1,027 participants, the mean (SD) age was 58.9 (6.1) and 876 (85%) were male. 312 (30%) had zero sexual partners in the past year, 308 (30%) had one partner, 197 (19%) had 2-5 partners, and 210 (20%) had >5 partners. Of the participants with one partner, 230 (75%) were married, coupled or partnered, and 78 (25%) were single, widowed, separated, or divorced (Single). Figure 1 shows that people with one partner were significantly less lonely than any other group (p< 0.01 for pairwise comparisons), and all other groups were statistically similar to each other. This pattern was also seen with depression (p< 0.01 for pairwise comparisons, Figure 2). Among subgroup of people with one sexual partner, those who were married, coupled or partnered were less lonely (4.41 vs. 5.67, p< 0.01) and less depressed (0.95 vs 1.38, p=0.02) than those who were single, widowed, separated, or divorced. Conclusion Among OALWH, people with one sexual partner were less lonely and depressed than people with zero or with ≥2 partners. Furthermore, people with one sexual partner who were married or in a committed relationship were less lonely and depressed than people with one sexual partner who were not. Disclosures Peter Mazonson, MD, MBA, ViiV Healthcare (Grant/Research Support) Jeff Berko, MPH, BS, ViiV Healthcare (Scientific Research Study Investigator) Theoren Loo, MPH, ViiV Healthcare (Grant/Research Support) Giselle D. Coelho, MD. MPHTM, Lilly (Research Grant or Support)Medscape, Clinical Care Options (Independent Contractor)Viiv, Gilead, Janssen (Advisor or Review Panel member, Research Grant or Support) Erik Lowman, MD, Gilead (Grant/Research Support)Janssen (Grant/Research Support)ViiV (Grant/Research Support) Peter Shalit, MD, PhD, Abbvie (Grant/Research Support)Gilead Sciences (Consultant, Grant/Research Support, Speaker’s Bureau)Glaxo Smithkline (Consultant, Grant/Research Support)Janssen (Consultant, Grant/Research Support, Speaker’s Bureau)Merck (Grant/Research Support, Speaker’s Bureau)Thera (Speaker’s Bureau)ViiV Healthcare (Speaker’s Bureau) Frank Spinelli, MD, ViiV Healthcare (Employee)

Background: Older adults (≥50 y) living with HIV (OALWH) may experience elevated levels of depression, anxiety, and loneliness. Online mindfulness lessons have the potential to ameliorate these problems and enhance access, especially during the COVID-19 pandemic. The objective of this randomized controlled trial was to determine the effectiveness of online mindfulness lessons in reducing feelings of depression, anxiety, and loneliness among OALWH. Methods: The study was conducted between May and August 2020. Individuals with any degree of self-reported loneliness at baseline were eligible to participate. Outcomes of interest included depression, measured using the Center for Epidemiologic Studies Depression Scale (CES-D-10), anxiety measured using the Generalized Anxiety Disorder (GAD-7), and loneliness measured using both the Three-item Loneliness Scale (3IL) and a Daily Diary that asked “How lonely do you feel today?” Two sample t-tests were used to compare group scores at follow-up. Results: Of 214 participants who were randomized, the mean (SD) age was 60.4 (5.9) years, 89% were male, 69% were white, and 74% were gay or lesbian. At the end of the 25-day intervention, the intervention group demonstrated reduced levels of depression (2.6 point improvement;p<0.01), and reduced levels of anxiety (1.5 point improvement;p=0.03) compared to the control group (Table 1). Among the subset of participants with elevated baseline depression scores (defined as CES-D-10 ≥ 8), the between-group improvement in depression scores was greater (4.2 point improvement;p<0.01). Similarly, among the subset of participants with elevated baseline anxiety scores (defined as GAD-7 ≥ 5), the between-group improvement in anxiety scores was greater (2.4 point improvement;p<0.01). Loneliness improved significantly, as indicated by the Daily Diary, for those with at least moderate loneliness at baseline (0.7 point improvement;p<0.01). Conclusion: This randomized controlled trial is the first to show that a series of brief, online mindfulness audio lessons improves mental health outcomes among OALWH who report some degree of loneliness. For many patients, this intervention may offer emotional relief, particularly with regard to depression and anxiety, even in the face of the COVID-19 pandemic.

Abstract Background Improving quality of life (QoL) is an important goal of care for people living with HIV (PLWH). This analysis uses data from the Aging with Dignity, Health, Optimism and Community (ADHOC) online registry to identify the different challenges faced by older white/Caucasian (“white”) and black/African American (“black”) gay or bisexual men living with HIV, and to assess differences in total QoL between the two groups. Methods QoL was measured using the PozQoL, a validated instrument for PLWH. The PozQoL assesses QoL across four domains: health concerns, psychological, social, and functional wellbeing. Total QoL was determined by combining domain scores for a total score. Student’s t-tests and chi-squared tests were used to identify disparities between black and white men. Factors with p< 0.05 were used as control variables in a multivariable linear regression model where PozQoL total score was the dependent variable. Results In the ADHOC database, 91% (n=612) of respondents were white men (WM) and 9% (n=59) were black men (BM). Both BM and WM had a median age of 59 years, and had a similar number of comorbidities (7.9 vs 9.2 respectively, p=0.12). Compared to WM, BM were more likely to be single (74% vs 51%, p< 0.001), less likely to have an income greater than $50,000 (25% vs 56%, p< 0.001), less likely to have a college degree or more (42% vs 69%, p=0.034), and less likely to be virally suppressed (87% vs 96%, p=0.001). Even after controlling for these differences in the multivariable model, BM had significantly higher total QoL than WM (Table 1). Conclusion In this analysis, there were substantial differences between older BM and WM living with HIV. After controlling for sociodemographic and clinical challenges, BM still reported higher QoL than WM. Programs designed to improve QoL for older gay and bisexual BM and WM living with HIV should take into consideration the unique strengths and challenges faced by each group. Disclosures Peter Mazonson, MD, MBA, ViiV Healthcare (Grant/Research Support) Theoren Loo, MS, BS, ViiV Healthcare (Grant/Research Support) Jeff Berko, MPH, BS, ViiV Healthcare (Grant/Research Support) Oluwatoyin Adeyemi, MD, ViiV Healthcare (Grant/Research Support) Alan Oglesby, MPH, ViiV Healthcare (Employee) Frank Spinelli, MD, ViiV Healthcare (Employee) Andrew Zolopa, MD, ViiV Healthcare (Employee)

ABSTRACT Loneliness is common among older (age 50+) people living with HIV (PLWH). However, little is known about the prevalence of loneliness across subgroups of older PLWH, and the factors that impact loneliness. An online questionnaire was used to collect data from 998 older PLWH. Of those, 61% were 50–59 years old and 39% were 60 or older. The majority were male (89%), gay (77%), and white (69%). Fifty-one percent of participants were classified as lonely. The prevalence of loneliness was lower in the older age group, 46.2% vs. 53.8% (Χ 2 = 5.53, p = 0.02). Covariates associated with loneliness included being younger, being single, having at least a four-year college degree, living alone, screening positive for depression, using recreational drugs, smoking tobacco, having a lower quality of life, and not feeling close to friends. Logistic regression analysis showed that the “younger old” were at 26% greater risk of loneliness, after controlling for the effects of these covariates (RR 1.26, 95% CI: 1.06–1.45). Reasons why the “older old” were less lonely may include lower rates of depression and lower likelihood of feeling distant from friends. Understanding factors that protect the “older old” against loneliness may provide guidance for future interventions.

People living with HIV (PLWH) experience chronic pain that may impact function. Gaps in knowledge exist for factors that impact pain and pain medication use in older (age 50+) PLWH. Data for this study were obtained from the Aging with Dignity, Health, Optimism and Community (ADHOC) cohort, an observational study of older PLWH from 10 clinics across the United States. Participants self-reported socioeconomic, psychosocial, and health factors via an online questionnaire. Of 1,051 participants, 66% reported pain. In a multivariable regression model, multimorbidity and tobacco use were associated with a greater likelihood of experiencing pain, whereas being male, black, and having higher cognitive function were associated with a lower likelihood of experiencing pain. Of the 696 participants who reported pain, 46% reported using pain medication. In a multivariable regression model, pain medication use was associated with multimorbidity and with lower income. Recognition of the factors associated with pain and pain medication use in this vulnerable population may lead to strategies that mitigate negative health outcomes.

Pain impacts up to 55% of people living with HIV (PLWH) and negatively impacts function. To date, limited data exist regarding factors that contribute to pain in older PLWH. Data were utilized from the Aging with Dignity, Health, Optimism and Community (ADHOC) cohort, an observational study of older PLWH from ten clinics across the U.S. that collects patient-reported outcomes (PROs) on socioeconomic, psychosocial, and health factors. To measure pain, ADHOC participants were asked whether they had been diagnosed with back pain, hip pain, joint pain, or muscle pain, and were also instructed to report chronic pain conditions that were not listed. Bivariate analyses were performed to determine the associations between pain and PROs. Of 1,051 participants, 66% reported at least one type of pain. Factors associated with pain included multimorbidity, low income, anxiety, loneliness, depression, tobacco use, and older age (Table 1). Factors negatively associated with pain included employment, higher cognitive function, higher quality of life, greater resilience, higher social well-being, and alcohol use. Table 1. Characteristics associated with pain among older people living with HIV. Pairwise correlations are reported above using correlation coefficient r. Improving pain management is currently a priority in the US healthcare system. Some factors identified in this study, including systemic issues such as socioeconomic status and employment, are not easily modifiable. Other factors, such as anxiety, depression, and smoking, are modifiable and therefore represent targets for interventions focused on improving pain and its sequelae in older PLWH. Maile Karris, MD, Gilead Sciences (Grant/Research Support)Viiv Healthcare (Grant/Research Support) Peter Mazonson, MD, MBA, ViiV Healthcare (Grant/Research Support) Theoren Loo, MS, BS, ViiV Healthcare (Grant/Research Support) Jeff Berko, MPH, BS, ViiV Healthcare (Grant/Research Support) Frank Spinelli, MD, ViiV Healthcare (Employee) Andrew Zolopa, MD, ViiV Healthcare (Employee)

Abstract Background Frailty is a concern among older people living with HIV (PLHIV). There is a paucity of research characterizing PLHIV who are at risk of becoming frail (pre-frailty). To investigate how HIV impacts older PLHIV in the United States, a new study called Aging with Dignity, Health, Optimism and Community (ADHOC) was launched at ten sites to collect self-reported data. This analysis uses data from ADHOC to identify factors associated with pre-frailty. Methods Pre-frailty was assessed using the Frailty Index for Elders (FIFE), where a score of zero indicated no frailty, 1–3 indicated pre-frailty, and 4–10 indicated frailty. A cross-sectional analysis was performed on 262 PLHIV (age 50+) to determine the association between pre-frailty and self-reported sociodemographic, health, and clinical indicators using bivariate analyses. Factors associated with pre-frailty were then included in a logistic regression analysis using backward selection. Results The average age of ADHOC participants was 59 years. Eighty-two percent were male, 66% were gay or lesbian, and 56% were white. Forty-seven percent were classified with pre-frailty, 26% with frailty, and 27% with no frailty. In bivariate analyses, pre-frailty was associated with depression, low cognitive function, depression, multiple comorbidities, low income, low social support and unemployment (Table 1). In the multiple logistic regression analysis, pre-frailty was associated with having low cognitive function (Odds Ratio [OR] 8.56, 95% Confidence Interval [CI]: 3.24–22.63), 4 or more comorbid conditions (OR 4.00, 95% CI: 2.23–7.06), and an income less than $50,000 (OR 2.70, 95% CI: 1.56–4.68) (Table 2). Conclusion This study shows that commonly collected clinical and sociodemographic metrics can help identify PLWH who are more likely to have pre-frailty. Early recognition of factors associated with pre-frailty among PLHIV may help to prevent progression to frailty. Understanding markers of increased risk for pre-frailty may help clinicians and health systems better target multi-modal interventions to prevent negative health outcomes associated with frailty. Disclosures All authors: No reported disclosures.

The population of people living with HIV (PLWH) is aging. To investigate how HIV impacts older PLWH in the U.S., a new study called Aging with Dignity, Health, Optimism and Community (ADHOC) was launched at ten sites to collect self-reported data. A cross-sectional analysis of ADHOC was performed on 698 PLWH (age 50+) to determine associations between self-reported quality of life (QoL) and sociodemographic, health status, and clinical indicators. QoL was assessed using the PozQoL, a validated, HIV disease-specific instrument. The impact of various factors on QoL was analyzed using bivariate analyses. Factors associated with QoL at p < 0.2 were included in a backwards, stepwise, linear regression model. The average age of ADHOC participants was 59 years. 91% were male, 89% were gay or lesbian, 75% were white, 95% had an undetectable viral load, and 52% were employed. Clinical characteristics associated with lower QoL included having six or more comorbid conditions, taking a higher number of antiretroviral medications, and taking a higher number of non-HIV medications. Behavioral characteristics associated with lower QoL included having anxiety or depression. Social characteristics contributing to lower QoL included being single, HIV-related stigma, and an annual household income less than $50,000. Being 65 or older was associated with higher QoL (all p's < 0.05). Among PLWH over 50, some factors related to quality of life, like age, cannot be changed. Others may be modified through lifestyle choices (being single versus in a relationship) or through medical interventions (treating depression and anxiety, and minimizing the number of medicines prescribed). Given these findings, measuring QoL among older PLWH may surface unmet needs that allow for improvements in care beyond viral suppression. Observational studies of PLWH over age 50 are important to better understand the overall needs of this growing population.

Abstract Background Socioeconomic factors have been identified as a root cause of a wide range of health outcomes. However, there are no studies that describe the impact of these factors on patient-reported outcomes (PROs) among older (age 50+) people living with HIV (PLWH). This study examines the relationship between annual household income, sociodemographic factors, and several PROs among older PLWH. Methods A cross-sectional analysis examined the relationships between self-reported annual household income, sociodemographic information, and validated PROs. Statistical differences within sociodemographic groups were determined using chi-squared tests, and within PROs using bivariate risk ratios. Results Of 922 participants, the median age was 58 years (range: 50–88). The majority of participants were male (89%), gay (79%), and white (70%). Fifty-five percent reported an annual household income of less than $50,000 per year and 45% reported a household income of $50,000 or greater. Among people in the lower-income group, 33% were working full or part time, 24% were retired, and 43% were disabled, whereas among people in the higher income group, 76% were working full or part time, 19% were retired, and 5% were disabled (Table 1). Bivariate analysis showed that while there was not a significant relationship between age and income, income was significantly associated with work status, race, gender, education, relationship status, sexual orientation, and having enough money to meet basic needs. People with lower household income were significantly more likely to be depressed, anxious, and lonely, and to have 4 or more comorbid conditions (Table 2). They were also less likely to have high resilience, high social well-being, and high quality of life. Conclusion To the best of our knowledge, this is the first examination of the relationship between self-reported annual household income and PROs among older PLWH. In these bivariate analyses, income was positively associated with desirable PROs, and negatively associated with undesirable PROs. To be successful, programs designed to improve health outcomes for older PLWH must take into account the economic challenges faced by many in this group. Disclosures All authors: No reported disclosures.

Abstract Background The population of people living with HIV (PLHIV) is aging. A new registry and online community, called Aging with Dignity, Health, Optimism and Community (ADHOC), has been launched to investigate how HIV impacts the lives of older PLHIV. Methods A cross-sectional analysis of ADHOC was performed on 208 PLHIV 50+ years of age. One hypothesis was that increasing age would be associated with greater loneliness. Loneliness was assessed using the UCLA Loneliness Scale (ULS-3). A score ≥6 was classified as lonely. The impact of aging on loneliness was analyzed by ANOVA and multiple linear regression. Results ULS-3 scores ranged from 3 to 9 and 48.6% of subjects were classified as lonely. Significant differences were found between the 50–59, 60–65 and 65+ age groups, with older age associated with decreased loneliness (P = 0.018) (Table 1). In the multiple linear regression model, these observations persisted even after controlling for gender, sexual orientation, race/ethnicity, relationship status, education, income, and number of comorbidities (Table 2). Decreases in loneliness were associated with female gender, being in a relationship, higher income, and fewer comorbidities (P < 0.05). Conclusion Among PLHIV over 50, loneliness is less severe in older age groups. Additional investigation is needed to better understand potential causes and to find ways to remediate loneliness among older PLHIV. Table 1: Comparison of ULS-3 Scores by Age 50–59 (n = 133) 60–65 (n = 40) 65+ (n = 35) P-value1 ULS-3 Mean ± SD 5.8 ± 2.1 5.1 ± 2.0 4.8 ± 1.8 0.018 1 P-value from ANOVA. Table 2: Multiple Linear Regression of ULS-3 Scores n % Coef. P-value Age 50–59 113 54.3 Ref. 60–65 40 19.2 −0.80 0.026 65+ 35 16.8 −1.41 <0.001 Gender Male 196 94.2 Ref. Female 12 5.8 −2.06 0.024 Sexual orientation Gay/lesbian/other 185 93.4 Ref. Heterosexual 19 9.3 1.32 0.108 Race/ethnicity White 167 81.1 Ref. Black 13 6.3 −0.34 0.600 Hispanic/Latino 16 7.8 −0.96 0.070 Other 10 4.9 −0.99 0.138 Relationship status Single 95 54.3 Ref. In a relationship 113 45.7 −1.43 <0.001 Education Less than college graduate 86 41.4 Ref. College graduate (4 years) 82 39.4 0.23 0.474 Graduate school graduate 40 19.2 −0.02 0.963 Income <$50,000 84 44.9 Ref. ≥$50,000 103 55.1 −0.60 0.049 Comorbidities 0–5 77 37.0 Ref. 5+ 131 63.0 0.65 0.026 Disclosures M. Kane, ViiV Healthcare: Research Contractor, Research grant and Research support. Mazonson & Santas, Inc.: Employee, Salary. P. Mazonson, Mazonson & Santas, Inc.: Co-Founder and Shareholder, Salary. ViiV Healthcare: Investigator and Research Contractor, Research grant and Research support. A. Zolopa, ViiV Healthcare: Employee, Salary. F. Spinelli, ViiV Healthcare: Employee, Salary. P. Eitz Ferrer, ViiV Healthcare: Employee, Salary. P. Shalit, Gilead: Consultant, Investigator and Speaker’s Bureau, Consulting fee, Research support and Speaker honorarium. Viiv: Consultant and Speaker’s Bureau, Consulting fee and Speaker honorarium. Janssen: Consultant, Investigator and Speaker’s Bureau, Research support and Speaker honorarium. Merck: Speaker’s Bureau, Speaker honorarium.

Background: Although cord blood (CB) stem cell research is being conducted for treatment of cerebral palsy (CP), little is known about children with CP and stored CB. Aims: To compare demographic and clinical characteristics of children with CP and stored CB to children with CP identified in a population-based study. Methods and Procedures: The Longitudinal Umbilical Stem cell monitoring and Treatment REsearch (LUSTRE (R)) Registry recruited children from the largest US private CB bank. Demographics, co-morbidities, and gross motor function (GMFCS level and walking ability) were collected and, where possible, compared with the CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network. Outcomes and Results: 114 LUSTRE participants were compared to 451 ADDM participants. LUSTRE participants were more likely to be white, but sex distribution was similar. Co-morbidities (autism and epilepsy) and functional mobility were also similar. Conclusions and Implications: The results of this analysis suggest that while children diagnosed with CP and with access to stored CB differ from a broader population sample in terms of demographics, they have similar clinical severity and comorbidity profiles. As such, LUSTRE may serve as a valuable source of data for the characterization of individuals with CP, including individuals who have or will receive CB infusions.

Purpose: Cord blood (CB) is currently under investigation as a potential treatment for cerebral palsy (CP). A small percentage of children whose CB is stored in private CB banks subsequently develop CP. However, it is not known how the clinical status of children with CP and stored CB compares to that of children from a broader population-based CP sample. Methods: A total of 114 children with CP and autologous CB stored in a large, private US CB bank were recruited into the bank’s Longitudinal Umbilical Stem …

Introduction Little is known about the prevalence of conditions potentially amenable to cellular therapy among families storing umbilical cord blood in private cord blood banks. Methods A cross-sectional study of families with at least one child who stored umbilical cord blood in the largest private cord blood bank in the United States was performed. Respondent families completed a questionnaire to determine whether children with stored cord blood or a first-degree relative had one or more of 16 conditions amenable primarily to allogeneic stem cell transplant ("transplant indications") or 16 conditions under investigation for autologous stem cell infusion ("regenerative indications"), regardless of whether they received a transplant or infusion. Results 94,803 families responded, representing 33.3 % of those surveyed. Of respondent families, 16.01 % indicated at least one specified condition. 1.64 % reported at least one first-degree member with a transplant indication potentially treatable with an allogeneic stem cell transplant. The most common transplant indications reported among first-degree family members were Non-Hodgkin's Lymphoma (0.33 %), Hodgkin's Lymphoma (0.30 %), and Acute Lymphoblastic Leukemia (0.28 %). 4.23 % reported at least one child with a regenerative indication potentially treatable with an autologous stem cell infusion. The most common regenerative indications among children with stored umbilical cord blood were Autism/Autism Spectrum Disorder/Apraxia (1.93 %), Other Developmental Delay (1.36 %), and Congenital Heart Defect (0.87 %). Discussion Among families storing umbilical cord blood in private cord blood banks, conditions for which stem cell transplant or infusion may be indicated, or are under investigation, appear to be prevalent, especially for regenerative medicine indications.

Little is known about the prevalence of diseases amenable to allogeneic or autologous stem cell infusions among families storing newborn stem cells in private cord blood banks. We surveyed families with at least one child who had stored newborn stem cells at the largest private cord blood bank in the US. We requested that they complete a Family Health Questionnaire to determine whether a child with stored stem cells or a first degree relative of that child currently had one or more of 16 diseases or conditions amenable primarily to allogeneic stem cell transplant (“transplant indications”) or 15 diseases or conditions primarily under investigation for autologous stem cell infusion (“regenerative indications”), regardless of whether they planned to receive a transplant or infusion. We received 43,259 completed responses. Of the families completing the questionnaire, 1.87% reported at least one transplant indication and 17.04% reported at least one regenerative indication. Figure 1 shows the total number and percent of families that reported each of the transplant and regenerative indications listed. For transplant indications, after subtracting families where the child with the condition was the family member with stored cells, 1.68% of families reported at least one indication. The most common indications reported were Hodgkin's lymphoma (0.33%), non-Hodgkin's lymphoma (0.32%), and acute lymphoblastic leukemia (0.25%) (Figure 2). Similarly, for regenerative indications, after subtracting families where the child with the condition was not the family member with stored cells, 4.98% of families reported at least one indication. The most common indications reported were autism/apraxia (1.99%), other developmental delay (1.41%), and childhood hearing loss (0.39%) (Figure 3). Among families who store newborn stem cells in private cord blood banks, conditions for which stem cell transplant or infusion may be indicated or under investigation are relatively prevalent, especially for regenerative indications.Figure 1Disease NameFamilies reporting conditionFamilies reporting condition/total families respondingTransplant indicationsAcute lymphoblastic leukemia1450.34%Hodgkin's lymphoma1440.33%Non-Hodgkin's lymphoma1410.33%Sarcoma730.17%Sickle cell disease540.12%Acute myelogenous leukemia420.10%Neuroblastoma400.09%Beta thalassemia major380.09%Chronic myelogenous leukemia370.09%Chronic lymphocytic leukemia320.07%Severe aplastic anemia220.05%Multiple myeloma190.04%Myelodysplastic syndrome100.02%Diamond-blackfan anemia60.01%Fanconi anemia40.01%Hurler syndrome00.00%TOTAL*8071.87%Regenerative indicationsAutism/apraxia13483.12%Diabetes, type 110882.52%Diabetes, type II10442.41%Inflammatory bowel disease10442.41%Other developmental delay10232.36%Childhood hearing loss5021.16%Cerebral palsy/periventricular leukomalacia/hypotonia3480.80%Systemic lupus1920.44%Spinal cord injury1540.36%Traumatic brain injury (post-delivery)1390.32%Hydrocephalus1320.31%Hypoxic-ischemic brain injury1280.30%In-utero brain injury/stroke1090.25%Muscular dystrophy740.17%Infant lung disease480.11%TOTAL*737317.04% Open table in a new tab Figure 2Transplant indications where child with stored cord blood does not have conditionDisease NameFamily countFamily count/total families respondingHodgkin's lymphoma1420.33%Non-Hodgkin's lymphoma1370.32%Acute lymphoblastic leukemia1100.25%Sarcoma660.15%Sickle cell disease490.11%Acute myelogenous leukemia390.09%Beta thalassemia major370.09%Chronic myelogenous leukemia370.09%Chronic lymphocytic leukemia310.07%Neuroblastoma240.06%Severe aplastic anemia190.04%Multiple myeloma180.04%Myelodysplastic syndrome90.02%Diamond-blackfan anemia60.01%Fanconi anemia30.01%Hurler syndrome00.00%TOTAL*7271.68% Open table in a new tab Figure 3Regenerative indications where child with stored cord blood has conditionDisease nameFamily countFamily count/total families respondingAutism/apraxia8591.99%Other developmental delay6091.41%Childhood hearing loss1690.39%Cerebral palsy/periventricular leukomalacia/hypotonia1160.27%Diabetes, type 11140.26%Inflammatory bowel disease610.14%Hydrocephalus530.12%Hypoxic-ischemic brain injury440.10%In-utero brain injury/stroke380.09%Infant lung disease300.07%Traumatic brain injury (post-delivery)240.06%Muscular dystrophy150.03%Spinal cord injury150.03%Diabetes, type II50.01%Systemic lupus30.01%TOTAL*21554.98%∗Families may report more than one condition or disease. Open table in a new tab