Parent Project Research Articles

Hospital Experiences of Carers in Relation to the Comprehensive Care Standard: A Mixed Method Study.

To explore the care experiences of informal carers of people with chronic conditions in hospitals and identify areas for improvement in the context of comprehensive care delivery. A explanatory sequential mixed-method study. This study was conducted, involving a survey with 182 carers and interviews with 31 carers of individuals who attended an Australian hospital. Descriptive analysis of quantitative data was performed using RStudio, while thematic analysis of qualitative data was conducted using NVivo. The findings revealed seven overarching components of care that influenced carers' hospitalexperiences and their perceptions of care quality. Areas requiring improvement were identified within these categories. This review identifies common perspectives of informal carers of people with chronic conditions in hospital settings and highlights important areas that require attention to improve carers' hospital care experiences. Carers should be welcomed, involved, informed and supported during hospital attendance to foster the most positive care experiences. Healthcare professionals should involve carers in assessment, shared decision-making and the care process and recognise and address carers' needs. The findings revealed the carer's hospital experiences in the context of comprehensive care delivery and identified areas requiring improvement. The CROSS and the COREQ guidelines were followed. The study protocol was presented to stakeholders from two hospitals in Australia, a Patient and Carer Advisory Board (attached to the parent project: evaluating Quality of Care (eQC))and the Australian Commission on Safety and Quality in Health Care, and discussions were held to assess the relevance and significance of this study to clinical practice and health policy.

The ethics of non-partner requests for posthumous assisted reproduction.

After the death of a loved one, family will occasionally request posthumous assisted reproduction (PAR). Professional medical societies in the US and Europe oppose such requests without written consent except from the surviving partner with whom the deceased presumably shared a joint reproductive project. Here, however, we argue that joint reproductive projects are not limited to two-person romantic partners and therefore ethical policies should not be either. In other words, we argue the criterion of being in a romantic partnership with the decedent is biased and unjustly excludes certain family formations. We begin by describing the professional society guidelines to highlight how they presume a two-person romantic couple is the ideal basis for reproductive projects and families. Then, we discuss examples of alternative parental projects, noting that they are usually grounded in feminist and queer values. Finally, we respond to potential objections about violating the autonomy of the deceased and conflating reproductive and parental projects. In sum, as long as medical societies continue to uphold a policy whereby romantic partners may seek PAR in the absence of written consent, we believe that these societies must also allow for the potential of family formations that do not fit into the dominant paradigm.

The La dimensión política y psicosocial en prácticas grupales de enseñanza universitaria en psicología

It presents the systematization of teaching practices that have been developing for seven years in the Faculty of Psychology of the University of the Republic, the only public, co-governed and freely accessible university in Uruguay. The experience is located in two degree courses that seek to reflect on the formative trajectories located. We have found that the group dynamics and methodological tools of Clinical Sociology, particularly the Parental Project and the Social Trajectory taken as pedagogical-didactic devices, enable subjective and transformative processes. Both are part of the analysis of the involvement that enables the deployment of the political dimension of training and professional practice, contributing to questioning and resisting the impact of neoliberal logic at the societal and university level. Both devices also enable the implementation of an ethical-political stance of the teacher-student relationship on the level of knowledge that challenges the place of being-teacher, enhancing participation and autonomy in the process of becoming university. From the biographical singularity, it is possible to visibilize the various forms that assume the plot of the sociopsychic bond where they are produced, reproduced, resisted, rejected and re-signified university formation. It will deepen the transversal analysis of the macro socio-historical trajectory and the socio-cultural mandates, where from the story of the students themselves it is possible to politicize the formative experience. In this sense we understand that the methodological supports used can be an innovative key to rethink pedagogical proposals and their relationship with curricular contents in university education.

P-338 Redefining elective co-parenting: a systematic assessment of concepts and definitions found in the literature and a recommendation for new terminology

Abstract Study question What concepts and concept definitions (including normative meanings) are found in the literature for forms of ‘elective co-parenting’ and which can be recommended? Summary answer Current terminology lacks comprehensiveness and often contains additional (hidden) meanings, thereby jeopardizing its usability for research on contemporary family formation. We suggest a new nomenclature. What is known already There is an increase in the variation of family forms, types of parenthood roles and methods for family formation. One such way of family building has most recently been referred to as “elective co-parenting”. Not to be confused with parenting after separation, elective co-parenting typically alludes to the intentional undertaking of a shared parental project by persons who are primarily in a reproductive (and not a ‘romantic’) relationship with each other. However, many other terms and somewhat diverging concept definitions have been put forward. It seems that a fundamental conceptual framework has not yet been established. Study design, size, duration We will adhere to a tailored set of guidelines for conceptual engineering organized in five stages: (i) Identify potential attributes by collecting a representative set of definitions, (ii) Organize the potential attributes by theme and identify any necessary & sufficient or shared ones, (iii) Develop a preliminary definition of the concept, (iv) Determine what functions our concepts should serve going forward, (v) Refine the conceptual definition and improve or replace the concept. Participants/materials, setting, methods A scoping review was performed by implementing a wide-ranging search string in ProQuest. We used the following selection criteria: the article is (a) a peer-reviewed journal article, book chapter, conference paper, or report, (b) published in the last ten years, (c) written in English, that (d) proposes an explicit concept definition (also including normative meanings). Papers cited in the retrieved publications were also included if they satisfied (a), (b), (c) and (d). Main results and the role of chance After screening the available literature for academic articles that contained one or several explicit definition(s) of ‘elective co-parenting’, and that met the other selection criteria; (a), (b) and (c), key attributes mentioned in these definitions were organized in themes, i.e. necessary and/or sufficient conditions; e.g. (a) ‘Pre-conception temporality’, (b) ‘Collaborative nature’, etc. Data analysis is currently ongoing. Our aim is to put forward a new and comprehensive concept definition. In this, we will provide more clarity by making explicit all the necessary conditions (and not merely one or two as is the case in many current definitions). Furthermore, prompted by ethical considerations (e.g. ‘elective’ puts notable emphasis on free choice), we will also propose a new term for the concept of ‘elective co-parenting’; one that is more neutral and therefore more appropriate to describe the particular family building practice. The study will be completed in the forthcoming months. Limitations, reasons for caution The main challenge of this study was the construction of a suitable search strategy to find papers on a topic for which a wide range of (often contested) concepts and terminology was used. For this, several, but certainly not all (e.g. empirical research), possible strategies and data sources were explored. Wider implications of the findings This study highlights the importance of establishing clear concepts and concept definitions in the pursuit of high quality research. Providing a more appropriate concept and concept definition for what is now known as “elective co-parenting” renders further inquiry into the topic more intellectually and ethically sound. Trial registration number N/A

O-170 The next generation of adolescents will consider more and more multiparenthood, poliparenthood

Abstract Although there are a variety of ways in which people navigate their intimate lives, theories of human development and intimacy often implicitly assume a preference for monogamy to be universal (Seltzer, 2000; Conley et al., 2017; Moors et al., 2017). While many people around the globe indeed engage in serial monogamy, remarkable transformations in relationship and family demography have occurred over the past several decades (Glick, 1988; Fisher, 1989; Finkel et al., 2014; Foster, 2016, in Moors et al. 2021) Studies show that 1 out of 6 people (16.8%) desire to engage in polyamory, and 1 out of 9 people (10.7%) have engaged in polyamory at some point during their life. (Moors et al 2021). Besides seeking hypotheses on the reason for this change away from the monogamous relationship form, and based on these data, we can try to make a prediction about the willingness of people to also consider parenthood in consensual non-monogamous or polyamorous relationships and thus engage in polyparenthood in the future. In the fertility centre too, we are past an era in which heterosexual infertile couples form the majority of our patient population. The need for donor material is increasing, although demand grossly exceeds supply. In addition, in many countries donor anonymity is still enshrined in law, which poses a problem for a growing number of acceptors. Many patients desire information about the donor and an increasing number of patients anticipate the perspective of the future child, which has a right to know its origins. Other patients wish the donor would also include parental involvement, and fundamentally desire the genitor to be a co-parent for their child at some point. As a result, some patients seek refuge in non-regulated open donation arrangements outside the fertility clinic. Indeed, internet websites dedicated to facilitating contact between individuals who want to meet people with the common aim of having a child are mushrooming. Such websites make elective co-parenting accessible to large numbers of people, including both singles and those with partners. Furthermore, these websites are not restricted to LGBTQ+ individuals; heterosexual men and women can also become members and contact potential reproductive partners who may be of a different sexual orientation to themselves. This could trigger a paradigm shift in the fertility clinic; is co-parenting, multi-parenting and poly-parenting the future? It could resolve problems of donor shortage, and the often difficult search for roots still faced by donor-conceived children as a consequence of donor anonimity. At Brussels IVF, we anticipated this paradigm shift and developed a procedure to counsel candidates for co-parenting. Welfare of the child is the guiding principle leading to a joint parenting project worked out together with the co-parents. This procedure and counseling topics to be addressed by the fertility centre will be presented.

Is endocrine surveillance important in the care of Duchenne Muscular Dystrophy? Results from a national survey to patients and families on endocrine complications

Glucocorticoids are standard of care for patients with Duchenne muscular dystrophy (DMD). Although prolonged exposure is associated with multiple endocrine side effects, current guidelines related to monitoring and management of endocrinopathies are suboptimal. We aim to explore community perceptions of endocrine related complications in patients with DMD, assess current level of understanding, and desire for further education. A 31-item online survey was sent through Parent Project to Muscular Dystrophy (PPMD) to Duchenne Registry members to be completed by patients or their caretakers. Response rate was 55% (n = 75). Steroids were taken by 93%, but only 50% were followed by endocrinology and 21% report never been seen by endocrinology. Bone health was discussed with 87% of patients and 60% were diagnosed with osteoporosis. Delayed puberty was discussed with 41% of patients with 23% receiving testosterone therapy. About half the patients reported a diagnosis of slowed growth. Only 51% of the participants recalled discussing adrenal insufficiency. Obesity was discussed with 59% of participants. Families felt education about steroid-induced endocrinopathies to be very or extremely important and prefer to discuss about this at the beginning of their steroid therapy. This demonstrates significant gaps in education and access to endocrine care in patients with DMD.

Mapping Microbial Selves: Field Notes from a Dirty Parenting Project

Microbes exist everywhere on, in and around us. They are both ubiquitous and largely invisible, at least until they make their presence, or absence, felt. Recent years have seen a heightened sensitivity to microbial threats in the wake of the COVID-19 pandemic and widespread concerns about antimicrobial resistance (AMR) to antibiotics. At the same time, there is also a growing interest in the microbiome as a source of ‘wild immunology’. From this viewpoint, the human body is comprised of, embedded within, and dependent on its exposure to an ecosystem of microbes, and the absence of such exposure is linked to the development of auto-immune conditions such as Crohn’s disease and ulcerative colitis. Inspired by an emerging body of work in the humanities and social sciences which looks to engage with so-called lay knowledge and understandings of microbial forms (including bacteria, viruses, and fungi) and processes (such as contagion or digestion), this Field Note explores the piloting of ‘body mapping’ as a research method to engage with families to explore their collective understanding of their children’s microbiome.

(205) The Psychological, Sexual, and Financial Impact of Infertility on Couples: An Urological Approach

Abstract Introduction Infertility is a public health issue with socioeconomic and demographic impact. Understanding the psychological, sexual, and financial repercussions on couples is crucial for comprehensive treatment. Objective Infertility can evoke complex emotions and disrupt the couple's sexual relationship. The aim of this study is to examine the psychological, sexual, and financial aspects of this condition on infertile couples. Methods A retrospective study was conducted on 50 couples undergoing infertility treatment at a military hospital. Data, including medical records, questionnaires, and follow-up information, were collected. Results 1. Psychological Impact: Infertility represents a failure of the parental project, leading to negative emotions. Women are more likely to report the psychological impact and seek help. Family pressure and potential divorce due to societal expectations were observed. 2. Sexual Impact: Infertility can significantly affect sexual life, causing decreased satisfaction, stress, and anxiety. Communication and emotional intimacy may suffer. Contrary to literature, men reported more sexual disorders due to socio-cultural factors and female partners' discomfort discussing sexuality. 3. Financial Impact: Infertility treatments incur substantial costs, adding to emotional and physical burdens. Financial implications vary by country, and lack of national funding policies lead to debt or abandonment of conception plans. In the study, half of the couples spent over $1000. Conclusions Infertility has a significant psychological, sexual, and financial impact on couples. A comprehensive approach involving healthcare practitioners and policymakers is necessary for significant improvement in the well-being of infertile couples. Disclosure No.

(343) The Psychological, Sexual, and Financial Impact of Infertility on Couples: An Urological Approach

Abstract Introduction Infertility is a public health issue with socioeconomic and demographic impact. Understanding the psychological, sexual, and financial repercussions on couples is crucial for comprehensive treatment. Objective Infertility can evoke complex emotions and disrupt the couple's sexual relationship. The aim of this study is to examine the psychological, sexual, and financial aspects of this condition on infertile couples. Methods A retrospective study was conducted on 50 couples undergoing infertility treatment at a military hospital. Data, including medical records, questionnaires, and follow-up information, were collected. Results 1. Psychological Impact: Infertility represents a failure of the parental project, leading to negative emotions. Women are more likely to report the psychological impact and seek help. Family pressure and potential divorce due to societal expectations were observed. 2. Sexual Impact: Infertility can significantly affect sexual life, causing decreased satisfaction, stress, and anxiety. Communication and emotional intimacy may suffer. Contrary to literature, men reported more sexual disorders due to socio-cultural factors and female partners' discomfort discussing sexuality. 3. Financial Impact: Infertility treatments incur substantial costs, adding to emotional and physical burdens. Financial implications vary by country, and lack of national funding policies lead to debt or abandonment of conception plans. In the study, half of the couples spent over $1000. Conclusions Infertility has a significant psychological, sexual, and financial impact on couples. A comprehensive approach involving healthcare practitioners and policymakers is necessary for significant improvement in the well-being of infertile couples. Disclosure No.

Is the association between mothers’ autistic traits and childhood autistic traits moderated by maternal pre-pregnancy body mass index?

BackgroundPrevious studies showed that there is a positive association between mothers’ and children’s autistic traits. We also tested if this association is more pronounced in mothers with a higher pre-pregnancy body mass index (BMI).MethodThe study was embedded in two cohorts with information available for 4,659 participants from the Generation R and for 179 participants from the Cambridge Ultrasound Siblings and Parents Project (CUSP) cohort. In both cohorts, maternal autistic traits were assessed using the short form of the Autism Spectrum Quotient, and information about maternal height and weight before pregnancy was obtained by questionnaire. Child autistic traits were assessed with the short form of Social Responsiveness Scale in Generation R (M = 13.5 years) and with the Quantitative Checklist for Autism in Toddlers (Q-CHAT) in the CUSP cohort (M = 1.6 years).ResultHigher maternal autistic traits were associated with higher autistic traits in toddlerhood (CUSP cohort; βadjusted = 0.20, p < 0.01), in early childhood (Generation R; βadjusted = 0.19, p < 0.01), and in early adolescence (Generation R; βadjusted = 0.16, p < 0.01). Furthermore, a higher maternal pre-pregnancy BMI was associated with higher child autistic traits, but only in Generation R (βadjusted = 0.03, p < 0.01). There was no significant moderating effect of maternal pre-pregnancy BMI on the association between autistic traits of mothers and children, neither in Generation R nor in CUSP. In addition, child autistic traits scores were significantly higher in mothers who were underweight and in mothers who were overweight compared to mothers with a healthy weight.ConclusionWe confirm the association between maternal and child autistic traits in toddlerhood, early childhood, and early adolescence. Potential interacting neurobiological processes remain to be confirmed.

Evaluating a parental project: a possible mission?

Evaluating a parental project: a possible mission?

Teach Your Parents project

We started the Teach Your Parents project to explain the science behind climate change through comics in a child-friendly manner. The project team was my sister, Nandini Sundram (Grade 6), me, Abhimanyu Sundram (Grade 11) and our father, Sanjay Sundram. School-children after reading the comic created painting based on what they had learnt. Selected paintings were exhibited in an Art gallery in Ottawa. Over 700 children from India and Canada took part and the final exhibition was held from Feb to April 2024. We also exhibited robotics enabled pieces to further inform audiences about climate change.&#x0D; The success of the project and its potential to create a social impact is exciting. We want to continue this initiative to reach larger audiences. We see collaboration between young people and adults as a way forward to fight climate change.&#x0D;

Older People's Descriptions of Their Engagement in Fall Prevention.

Evidence-based strategies to decrease fall rates are well established. However, little is understood about how older people engage in fall prevention strategies. Motivational Interviewing (MI) sessions aimed to facilitate individuals' engagement in fall prevention can be analyzed to learn what it means for older people to engage in fall prevention. Thus, the purpose of this study was to explore how older people describe their engagement in fall prevention. Participants in our parent project, MI for Fall Prevention (MI-FP), who received MI sessions were purposively selected for maximum variation in age, sex, fall risks, and MI specialist assigned. The first (of 8) MI sessions from 16 participants were recorded, transcribed, and analyzed using qualitative content analysis. Three researchers first deductively analyzed fall prevention strategies that participants described using an evidence-based fall prevention guideline as a reference. Then, we inductively analyzed the characteristics of these strategies and how participants engaged in them. Finally, we used the Capability, Opportunity, Motivation, Behavior (COM-B) model to organize our results about factors influencing engagement. We found (1) older adults engage in unique combinations of fall prevention strategies and (2) decisions about engagement in fall prevention strategies were influenced by multiple factors that were personal (e.g., who I am, capability, motivation, and opportunities). This study highlighted how fall prevention can be a life-long lifestyle decision for older people. Understanding older people's perspectives about engaging in fall prevention is essential to develop interventions to promote evidence-based fall prevention strategies in real-world settings.

Conseils en fertilité : une nouvelle offre de soins à développer en France

ObjectiveThe abandonment of the criterion of pathological infertility in ART and the societal preservation of fertility (FP) are the founders of a new practice which puts the parental project at the center of the support. It is in this context that the University Hospital of Nancy fertility Center has created fertility counselling (FC) care, allowing anyone single or in a couple who wishes to learn about their fertility access to fertility specialists in order to be informed by professionals of the medical, biological and regulatory possibilities of access to parenthood. MethodsWe conducted a single-center retrospective observational study from January 1st, 2020, to April 30th, 2023, in the Nancy Fertility Center. We collected the medical history, the previous journey in medical assistance to procreation, the reasons of consultation, the parental project and the outcomes of consultation of the patients consulting within the framework of the fertility advice. ResultsOf the 566 consultations that took place during the period, we studied 58 situations that corresponded to actual requests for fertility counseling corresponding to 41 single women, 9 single men and 8 couples. Majority of requests from women or men corresponded to requests for information on their fertility and couples wanted to be informed on their fertility or in a context of actual infertility. Women and men were referred in majority to FP and couples to ART consultation. ConclusionFC welcomed a new public questioning itself about its fertility and its parenthood project. FC is intended to be one of the 4 pillars of medical support for access to parenthood, alongside ART, FP, and the donation.

Safety and efficacy of tamoxifen in boys with Duchenne muscular dystrophy (TAMDMD): a multicentre, randomised, double-blind, placebo-controlled, phase 3 trial

Drug repurposing could provide novel treatment options for Duchenne muscular dystrophy. Because tamoxifen-an oestrogen receptor regulator-reduced signs of muscular pathology in a Duchenne muscular dystrophy mouse model, we aimed to assess the safety and efficacy of tamoxifen in humans as an adjunct to corticosteroid therapy over a period of 48 weeks. We did a multicentre, randomised, double-blind, placebo-controlled, phase 3 trial at 12 study centres in seven European countries. We enrolled ambulant boys aged 6·5-12·0 years with a genetically confirmed diagnosis of Duchenne muscular dystrophy and who were on stable corticosteroid treatment for more than 6 months. Exclusion criteria included ophthalmological disorders, including cataracts, and haematological disorders. We randomly assigned (1:1) participants using an online randomisation tool to either 20 mg tamoxifen orally per day or matched placebo, stratified by centre and corticosteroid intake. Participants, caregivers, and clinical investigators were masked to treatment assignments. Tamoxifen was taken in addition to standard care with corticosteroids, and participants attended study visits for examinations every 12 weeks. The primary efficacy outcome was the change from baseline to week 48 in scores on the D1 domain of the Motor Function Measure in the intention-to-treat population (defined as all patients who fulfilled the inclusion criteria and began treatment). This study is registered with ClinicalTrials.gov (NCT03354039) and is completed. Between May 24, 2018, and Oct 14, 2020, 95 boys were screened for inclusion, and 82 met inclusion criteria and were initially enrolled into the study. Three boys were excluded after initial screening due to cataract diagnosis or revoked consent directly after screening, but before randomisation. A further boy assigned to the placebo group did not begin treatment. Therefore, 40 individuals assigned tamoxifen and 38 allocated placebo were included in the intention-to-treat population. The primary efficacy outcome did not differ significantly between tamoxifen (-3·05%, 95% CI -7·02 to 0·91) and placebo (-6·15%, -9·19 to -3·11; 2·90% difference, -3·02 to 8·82, p=0·33). Severe adverse events occurred in two participants: one participant who received tamoxifen had a fall, and one who received placebo suffered a panic attack. No deaths or life-threatening serious adverse events occurred. Viral infections were the most common adverse events. Tamoxifen was safe and well tolerated, but no difference between groups was reported for the primary efficacy endpoint. Slower disease progression, defined by loss of motor function over time, was indicated in the tamoxifen group compared with the placebo group, but differences in outcome measures were neither clinically nor statistically significant. Currently, we cannot recommend the use of tamoxifen in daily clinical practice as a treatment option for boys with Duchenne muscular dystrophy due to insufficient clinical evidence. Thomi Hopf Foundation, ERA-Net, Swiss National Science Foundation, Duchenne UK, Joining Jack, Duchenne Parent Project, Duchenne Parent Project Spain, Fondation Suisse de Recherche sur les Maladies Musculaires, Association Monegasque contre les Myopathies.

Development and electronic health record validation of an algorithm for identifying patients with Duchenne muscular dystrophy in US administrative claims.

BACKGROUND: Muscular dystrophies (MDs) comprise a heterogenous group of genetically inherited conditions characterized by progressive muscle weakness and increasing disability. The lack of separate diagnosis codes for Duchenne MD (DMD) and Becker MD, 2 of the most common forms of MD, has limited the conduct of DMD-specific real-world studies. OBJECTIVE: To develop and validate administrative claims-based algorithms for identifying patients with DMD and capturing their nonambulatory and ventilation-dependent status. METHODS: This was a retrospective cohort study using the statistically deidentified Optum Market Clarity Database (including patient claims linked with electronic health records [EHRs] data) to develop and validate the following algorithms: DMD diagnosis, nonambulatory status, and ventilation-dependent status. The initial study sample consisted of US patients in the database who had a diagnosis code for Duchenne/Becker MD (DBMD) between October 1, 2018, and September 30, 2020, who were male, aged 40 years or younger on their first DBMD diagnosis, and met continuous enrollment and 1-day minimal clinical activities requirement in a 12-month measurement period between October 1, 2017, and September 30, 2020. The algorithms, developed by a cross-functional team of DMD specialists (including patient advocates), were based on administrative claims data with International Classification of Diseases, Tenth Revision, Clinical Modifications coding, using information of diagnosis codes for DBMD, sex, age, treatment, and disease severity (eg, evidence of ambulation assistance/support and/or evidence of ventilation support or dependence). Patients who met each algorithm and had EHR notes available were then validated against structured fields and unstructured provider notes from their own linked EHR to confirm patients' DMD diagnoses, nonambulatory status, and ventilation-dependent status. Algorithm performance was assessed by positive predictive value with 95% CIs. RESULTS: A total of 1,300 patients were included in the initial study sample. Of these, EHR were available and reviewed for 303 patients. The mean age of the 303 patients was 14.8 years, with 61.7% being non-Hispanic White. A majority had a Charlson comorbidity index score of 0 (59.4%) or 1-2 (27.7%). Positive predictive value (95% CI) was 91.6% (85.8%-95.6%) for the DMD diagnosis algorithm, 88.4% (80.2%-94.1%) for the nonambulatory status algorithm, and 77.8% (62.9%-88.8%) for the ventilation-dependent status algorithm. CONCLUSIONS: This work provides the means to more accurately identify patients with DMD from administrative claims data without a specific diagnosis code. The algorithms validated in this study can be applied to assess treatment effectiveness and other outcomes among patients with DMD treated in clinical practice. DISCLOSURES: This study was funded by Pfizer, which contracted with Optum to perform the study and provide medical writing assistance. Ms Schrader reports being an employee of Parent Project Muscular Dystrophy. Mr Posner reports being an employee and stockholder of Pfizer and receiving support from Pfizer for attending conferences not related to this manuscript. Dr Dorling reports being an employee and stockholder of Pfizer at the time the study was conducted and is a current employee of Chiesi USA, Inc. Ms Senerchia reports being an employee of Optum and owning stock in Pfizer and UnitedHealth Group, the parent company of Optum. Dr Chen reports being an employee and stockholder of Pfizer. Ms Beaverson reports being an employee of Pfizer and owning stock in Pfizer and Amicus Therapeutics. Dr Seare reports being an employee of Optum at the time the study was conducted. Dr Garnier and Ms Merla report being employees of Pfizer. Ms Walker reports being an employee of Optum. Dr Alvir reports being an employee and stockholder of Pfizer. Dr Mahn reports being an employee and stockholder of Pfizer. Dr Zhang reports being an employee of Optum. Ms Landis reports being an employee of Optum. Ms Buikema reports being an employee of Optum and holding stock in UnitedHealth Group, the parent company of Optum.

Fertility treatment, valuable life projects and social norms: In defence of defending (reproductive) preferences.

Fertility treatment enables involuntary childless people to have genetically related children, something that, for many, is a valuable life project. In this paper, I respond to two sets of objections that have been raised against expanding state-funded fertility treatment provision for existing treatments, such as in vitro fertilisation (IVF), and against funding new treatments, such as uterine transplantation (UTx). Following McTernan, I refer to the first set of objections as the 'one good among many' objection. It purports that it is unjustifiable for the state to prioritise the funding of the life project of becoming a parent through fertility treatment provision over the funding of other life projects that people might have. Following Lotz, I refer to the second set of objections as the 'norm-legitimation' objection. It maintains that the provision of costly forms of fertility treatment, such as UTx, would legitimise problematic social norms concerning genetic relatedness, reproduction and parenting, and that states should not engage in such a legitimation. In response to these objections, I defend the view that (reproductive) preferences ought to be taken more seriously when discussing fertility treatment provision and parental projects, and that not doing so can be costly, especially for women. The approach defended in this paper seeks to avoid disregarding and policing preferences and to reconcile their fulfilment with political projects aimed at improving the material and social conditions of sub-fertile people: people who, for social or biological reasons (or an intersection of the two), are unable to reproduce unassisted.

Abstract 63: Mobile Health Technology for Tailored Tobacco Cessation Support in Lao People’s Democratic Republic: A Pilot Trial

Abstract Purpose: Tobacco smoking (cigarettes: &amp;gt;90%) is the leading cause of preventable cancer morbidity and mortality in Lao People’s Democratic Republic (Lao PDR). Nonetheless, there are very few tobacco treatment programs in Lao PDR and none are accessible nationwide. Our parent project aims to use mobile health (mHealth) technology, which is highly scalable and affordable, to help Lao people quit smoking cigarettes. The aim of this pilot randomized controlled trial is to assess the feasibility, acceptability, and preliminary efficacy of our novel mHealth intervention. Methods: Fifty participants were recruited from Setthathirath Hospital in Vientiane and Champasak Hospital in Champasak Province (n=25/site). Participants were randomized to Standard Care (SC, n=25) or Automated Messaging (AM, n=25). SC comprised of brief advice to quit, a 2-week supply of nicotine patches, and self-help materials (prepared and printed by our team based on the World Health Organization’s guide to quit). AM consisted of the SC components plus a fully automated smartphone-based treatment program that involved interactive and tailored proactive messaging for 3 months (~2-3 messages per day), delivered by our InsightTM system. Results: All participants were Lao ethnicity and 14.3% were female. Results indicated high feasibility of the intervention (i.e., 90.7% of study messages/weekly assessments were delivered and 88.7% of these were read/completed). There was no loss to follow-up at 3 months. AM was highly acceptable: 91.6% agreed or strongly agreed that the InsightTM app was easy to use, 100% of AM participants agreed or strongly agreed that the message content was easy to understand, and 95.8% felt comfortable with opening messages in public places. Regarding preliminary efficacy, changes in self-efficacy to avoid smoking in various social situations (measured on a 5-point Likert scale) from baseline to the 3-month follow-up was 0.41 for AM participants and -0.12 for SC participants (P=0.68). Biochemically verified 7-day point prevalence abstinence at 3 months follow-up were comparably high for both groups (29.2% for AM and 28.0% for SC, relative risk: 0.96, 95% confidence interval: 0.39, 2.32). Conclusion: Our mHealth-based AM program for smoking cessation is highly feasible, disseminable, acceptable, and potentially efficacious in Lao PDR. Citation Format: Shweta Kulkarni, Phonepadith Xangsayarath, Dalouny Xayavong, Chanthavy Soulaphy, Khatthanaphone Phandouangsy, Phayvanh Keopaseuth, Khamsing Keothongkou, Tina Le, Damon Vidrine, Jennifer Vidrine, Summer Frank-Pearce, Michael Businelle, Thanh Bui. Mobile Health Technology for Tailored Tobacco Cessation Support in Lao People’s Democratic Republic: A Pilot Trial [abstract]. In: Proceedings of the 11th Annual Symposium on Global Cancer Research; Closing the Research-to-Implementation Gap; 2023 Apr 4-6. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(6_Suppl):Abstract nr 63.

AAV-vectored base editor trans-splicing delivers dystrophin repair

AAV-vectored base editor trans-splicing delivers dystrophin repair

A Project View of the Right to Parent

ABSTRACTThe institution of the family and its importance have recently received considerable attention from political theorists. Leading views maintain that the institution's justification is grounded, at least in part, in the non‐instrumental value of the parent–child relationship itself. Such views face the challenge of identifying a specific good in the parent–child relationship that can account for how adults acquire parental rights over aparticularchild – as opposed togeneralparental rights, which need not warrant a claim to parent one's biological progeny. I develop a view that meets this challenge. This Project View identifies the pursuit of aparental projectas a distinctive non‐instrumentally valuable good that provides a justification for the family and whose pursuit is necessary and sufficient for the acquisition of parental rights. This view grounds moral parenthood in anormativerelation as opposed to a biological one, supports polyadic forms of parenting, and provides plausible guidance in cases of assisted reproduction.