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The International Society for Stem Cell Research has updated its Guidelines for Stem Cell Research and Clinical Translation in order to address advances in stem cell science and other relevant fields, together with the associated ethical, social, and policy issues that have arisen since the last update in 2016. While growing to encompass the evolving science, clinical applications of stem cells, and the increasingly complex implications of stem cell research for society, the basic principles underlying the Guidelines remain unchanged, and they will continue to serve as the standard for the field and as a resource for scientists, regulators, funders, physicians, and members of the public, including patients. A summary of the key updates and issues is presented here.

Abstract: Paul Hebert and colleagues first described DNA barcoding in 2003, which led to international efforts to promote and coordinate its use. Since its inception, DNA barcoding has generated considerable [...]

OBJECTIVE: To understand information-gathering and decision-making processes of immigrant mothers for scheduled childhood vaccines, vaccination during pregnancy, seasonal flu and pandemic vaccination. METHODS: We conducted 23 qualitative semi-structured interviews with immigrated mothers from Bhutanese refugee, South Asian and Chinese communities. Participants lived in Edmonton, Alberta and had at least one child under eight years old. Using NVivo[TM] qualitative software, we generated an inductive coding scheme through content analysis of interview transcripts. RESULTS: Our three main findings on information gathering and use in vaccination decisions were: 1) participants in all three communities passively received immunization information. Most mothers learned about vaccine practices exclusively from health care practitioners during scheduled visits. Social networks were primary sources of information in origin countries but were lost during immigration to Canada; 2) participants demonstrated universal trust in vaccines (i.e., no anti-vaccination sentiment). They were comfortable in receiving vaccines for themselves and their children, regardless of past adverse reactions; 3) participants' recollection of the H1N1 vaccination campaign was almost nil, demonstrating the lack of reach of public health vaccination campaigns to designated priority groups (pregnant women and children) in Alberta. CONCLUSION: Our results highlight the limitations of Alberta's current vaccination communication strategies in reaching immigrant women. When immigrant mothers receive vaccination information, our results indicate they will likely follow recommendations. However, our study shows that current communication strategies are not making this information accessible to immigrant women, which limits their ability to make informed vaccination decisions for themselves and their children. KEY WORDS: Immunization; information seeking behaviour; decision-making; immigrants; child and maternal health La traduction du resume se trouve a la fin de l'article. OBJECTIF : Comprendre les processus de collecte d'information et de prise de decision des meres immigrantes pour la vaccination prevue, la vaccination pendant la grossesse, la grippe saisonniere et la vaccination en periode de pandemie. METHODES : Nous avons effectue 23 entrevues qualitatives semistructurees avec des meres immigrees des communautes de refugies bhoutanais, d'Asie du Sud et chinois. Les participantes vivaient a Edmonton, Alberta, et avaient au moins un enfant de moins de huit ans. Grace au logiciel qualitatif NVivo[TM], nous avons genere un schema de codage inductif au moyen de l'analyse du contenu de la transcription des entrevues. RESULTATS : Nos trois principales constatations sur la cueillette et le recours a l'information dans les decisions sur la vaccination etaient : 1) les participantes des trois collectivites recevaient passivement l'information sur l'immunisation. La plupart des meres obtenaient de l'information sur les pratiques de vaccination exclusivement des professionnels de la sante pendant les visites prevues. Les reseaux sociaux etaient la principale source d'information dans le pays d'origine, mais etaient perdus pendant l'immigration au Canada; 2) les participantes avaient une confiance universelle dans les vaccins (c.-a-d. aucun sentiment antivaccin). Elles se sentaient a l'aise de recevoir des vaccins pour elles-memes et leurs enfants, quelles qu'aient ete les reactions adverses passees; 3) le souvenir qu'avaient les participantes de la campagne de vaccination H1N1 etait presque nul, ce qui illustre l'absence de portee des campagnes de vaccination de la sante publique pour les groupes prioritaires designes (femmes enceintes et enfants) en Alberta. CONCLUSION : Nos resultats soulignent le peu d'efficacite des strategies de communication albertaines actuelles en matiere de vaccination a atteindre les femmes immigrantes. Nos resultats indiquent que les meres immigrantes suivront probablement les recommandations lorsqu'elles recoivent de l'information sur la vaccination. Mais notre etude montre que les strategies de communication actuelles ne fournissent pas cette information aux femmes immigrantes, ce qui limite leur capacite de prendre des decisions eclairees sur la vaccination pour elles-memes et leurs enfants. MOTS CLES : immunisation; comportement de recherche d'information; prise de decision; immigrants; sante de l'enfant et de la mere Can J Public Health 2015;106(4):e230-e235 doi: 10.17269/CJPH.106.4803, Vaccination is a cornerstone of modern public health efforts. Pregnant women, in particular, benefit from seasonal flu, rubella, varicella, tetanus, and other vaccinations because physiologically they are more likely than [...]

Expert consensus guidelines recommend referral of people with amyotrophic lateral sclerosis (ALS) to ALS health charities for support. Limited research indicates that patients and families value interaction with these volunteer sector organizations. We investigated how patient support from Canadian ALS health charities (ALS Societies) is experienced by those affected by ALS, and whether patient-centered outcomes validate recommendations for referral. Data were drawn from the ALS Talk Project, an asynchronous online focus group study. Patients and family caregivers were recruited from regions across Canada. Seven groups met online for 14 weeks between January and July 2020. Seventy-eight participants made statements about ALS Societies. Data were qualitatively analyzed using directed content analysis and the constant-comparative approach. Participants viewed ALS Societies as integral to the healthcare system. The Societies acted as patient navigators and filled perceived care gaps, including psychological support. They provided critical practical assistance, particularly equipment loans and peer support groups; comprehensive disease-related and real-life information; and personal connections. They facilitated knowledge of research, emerging therapies, and research opportunities. Delayed referral to ALS Society supports and information resources was a concern for some participants. ALS Societies provide patients with critical practical, informational, and emotional support and play an overarching role as patient/research navigators. Patient-centred outcomes support patient referral to ALS Societies. Communication about the services provided should be a standard component of clinical care, with choice of access left to individuals. Clinical conversations should be supplemented with information resources developed by these voluntary sector organizations. [ABSTRACT FROM AUTHOR]

The absence of disease modifying treatments for amyotrophic lateral sclerosis (ALS) is in large part a consequence of its complexity and heterogeneity. Deep clinical and biological phenotyping of people living with ALS would assist in the development of effective treatments and target specific biomarkers to monitor disease progression and inform on treatment efficacy. The objective of this paper is to present the Comprehensive Analysis Platform To Understand Remedy and Eliminate ALS (CAPTURE ALS), an open and translational platform for the scientific community currently in development. CAPTURE ALS is a Canadian-based platform designed to include participants' voices in its development and through execution. Standardized methods will be used to longitudinally characterize ALS patients and healthy controls through deep clinical phenotyping, neuroimaging, neurocognitive and speech assessments, genotyping and multisource biospecimen collection. This effort plugs into complementary Canadian and international initiatives to share common resources. Here, we describe in detail the infrastructure, operating procedures, and long-term vision of CAPTURE ALS to facilitate and accelerate translational ALS research in Canada and beyond. [ABSTRACT FROM AUTHOR]

Drugs are increasingly authorized based on less mature evidence, leaving payors faced with significant clinical and cost-effectiveness uncertainties. As a result, payors must often choose between reimbursing a drug that may not turn out to be cost-effective (or may even be unsafe) or delaying the reimbursement of a drug that is cost-effective and offers clinical benefit to patients. Novel reimbursement decision models and frameworks, such as managed access agreements (MAAs), may address this decision challenge. Here, we provide a comprehensive overview of the legal limitations, considerations, and implications for adopting MAAs in Canadian jurisdictions. We begin with an overview of current drug reimbursement processes in Canada, terminology and definitions of the different types of MAAs, and select international experiences with MAAs. We discuss the legal barriers to MAA governance frameworks, design and implementation considerations, and legal and policy implications of MAAs. Finally, we provide recommendations to guide policy development for implementing MAAs in Canada, based on existing literature, international experience, and our legal analysis. We conclude that legal and policy barriers likely prevent the adoption of a pan-Canadian MAA governance framework. More feasible is a quasi-federal or provincial approach, building on existing infrastructure. [ABSTRACT FROM AUTHOR]

In 2004, the International Human Genome Sequencing Consortium published its scientific description of the finished human genome sequence containing 20,000 to 25,000 protein-coding genes. (1) The Human Genome Project (HGP), [...]

Complementary and Alternative Medicines [CAM] are interventions that are not widely taught in medical schools and are not part of the usual arsenal of treatments and medications recommended and prescribed [...]