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Grauman, Å., Kontro, M., Haller, K., Nier, S., Aakko, S., Lang, K., . . . Kihlbom, U. (2023). Personalizing precision medicine: Patients with AML perceptions about treatment decisions. Patient Education and Counseling, 115, Article ID 107883.
Åpne denne publikasjonen i ny fane eller vindu >>Personalizing precision medicine: Patients with AML perceptions about treatment decisions
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2023 (engelsk)Inngår i: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 115, artikkel-id 107883Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

Background: This study aims to explore patients' with acute myeloid leukemia perceptions about precision medicine and their preferences for involvement in this new area of shared decision-making.

Methods: Individual semi-structured interviews were conducted in Finland, Italy and Germany (n = 16). The study population included patients aged 24-79 years. Interviews were analyzed with thematic content analysis.

Results: Patient's perceived lack of knowledge as a barrier for their involvement in decision-making. Treatment decisions were often made rapidly based on the patient's intuition and trust for the physician rather than on information, in situations that decrease the patient's decision capacity. The patients emphasized that they are in a desperate situation that makes them willing to accept treatment with low probabilities of being cured.

Conclusions: The study raised important issues regarding patients' understanding of precision medicine and challenges concerning how to involve patients in medical decision-making. Although technical advances were viewed positively, the role of the physician as an expert and person-of-trust cannot be replaced.

Practice implications: Regardless of patients' preferences for involvement in decision-making, information plays a crucial role for patients' perceived involvement in their care. The concepts related to precision medicine are complex and will imply challenges to patient education.

sted, utgiver, år, opplag, sider
Elsevier BV, 2023
Emneord
Acute myeloid leukemia (AML), Patient perception, Precision medicine, Patient preferences, Qualitative design, Shared decision-making
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-508856 (URN)10.1016/j.pec.2023.107883 (DOI)001037458500001 ()37421687 (PubMedID)
Forskningsfinansiär
Swedish Research Council, 2019-00903
Tilgjengelig fra: 2023-08-11 Laget: 2023-08-11 Sist oppdatert: 2023-08-11bibliografisk kontrollert
Simons, G., Caplan, J., DiSantostefano, R. L., Veldwijk, J., Englbrecht, M., Schölin Bywall, K., . . . Falahee, M. (2022). Systematic review of quantitative preference studies of treatments for rheumatoid arthritis among patients and at-risk populations. Arthritis Research & Therapy , 24(1), Article ID 55.
Åpne denne publikasjonen i ny fane eller vindu >>Systematic review of quantitative preference studies of treatments for rheumatoid arthritis among patients and at-risk populations
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2022 (engelsk)Inngår i: Arthritis Research & Therapy , E-ISSN 1478-6362, Vol. 24, nr 1, artikkel-id 55Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

Treatments used for rheumatoid arthritis (RA) are under investigation for their efficacy to prevent RA in at risk groups. It is therefore important to understand treatment preferences of those at risk. We systematically reviewed quantitative preference studies of drugs to treat, or prevent RA, to inform the design of further studies and trials of RA prevention. Stated preference studies for RA treatment or prevention were identified through a search of five databases. Study characteristics and results were extracted, and the relative importance of different types of treatment attributes was compared across populations. Twenty three studies were included 20 of RA treatments (18 of patients; 2 of the general public) and 3 prevention studies with first-degree relatives (FDRs). Benefits, risks, administration method and cost (when included) were important determinants of treatment choice. A benefit was more important than a risk attribute in half of the studies of RA treatment that included a benefit attribute and 2/3 studies of RA prevention. There was variability in the relative importance of attributes across the few prevention studies. In studies with non-patient participants, attributes describing confidence in treatment effectiveness/safety were more important determinants of choice than in studies with patients. Most preference studies relating to RA are of treatments for established RA. Few studies examine preferences for treatments to prevent RA. Given intense research focus on RA prevention, additional preference studies in this context are needed. Variation in treatment preferences across different populations is not well understood and direct comparisons are needed.

sted, utgiver, år, opplag, sider
BioMed Central (BMC), 2022
Emneord
Rheumatoid arthritis, Treatment preferences, Preventive treatment, Attributes, Systematic review
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-468460 (URN)10.1186/s13075-021-02707-4 (DOI)000759580000002 ()35193653 (PubMedID)
Prosjekter
IMI-PREFER
Tilgjengelig fra: 2022-02-25 Laget: 2022-02-25 Sist oppdatert: 2024-07-04bibliografisk kontrollert
Lampa, E., Sarkadi, A., Osman, F., Kihlbom, U. & Warner, G. (2022). Tracking involvement over time: a longitudinal study of experiences among refugee parents involved as public contributors in health research. International Journal of Qualitative Studies on Health and Well-being, 17(1), Article ID 2103137.
Åpne denne publikasjonen i ny fane eller vindu >>Tracking involvement over time: a longitudinal study of experiences among refugee parents involved as public contributors in health research
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2022 (engelsk)Inngår i: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 17, nr 1, artikkel-id 2103137Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

Purpose

Patient and public involvement (PPI) is becoming more common in research, but has been problematized for lack of diversity. While PPI literature increasingly focuses on assessment of PPI on research, a focus on the contributors is less common. This study tracked the experiences of involvement among four refugee parents involved as public contributors in a child mental health trial, over three years.

Methods

The study used a longitudinal qualitative design with focus group discussions. Data were analysed using thematic analysis combined with a longitudinal analysis approach.

Results

The refugee parents' motivations for being involved changed from focusing on individual benefits to societal change. They initially viewed themselves as guests, which transformed into utilizing the group for social support. Time impacted trust-building positively, with continued collaboration strengthening trust. Practical aspects were dominant in the beginning, which shifted over time to allow more focus on research. They identified several learnings they gained from involvement. A discrepancy in how parents and researchers viewed involvement was identified, where parents saw researchers as owners of the research.

Conclusions

To sustain successful PPI collaboration over time, researchers need to prioritize investment in time and resources, in communication, including working with interpreters, and in continued adjustments.

sted, utgiver, år, opplag, sider
Taylor & Francis Group, 2022
Emneord
Patient and public involvement, refugees, parents, longitudinal qualitative research, focus groups
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-483043 (URN)10.1080/17482631.2022.2103137 (DOI)000839300400001 ()35950287 (PubMedID)
Tilgjengelig fra: 2022-08-29 Laget: 2022-08-29 Sist oppdatert: 2024-04-19bibliografisk kontrollert
Schölin Bywall, K., Veldwijk, J., Hansson, M. G., Baecklund, E., Raza, K., Falahee, M. & Kihlbom, U. (2021). Does being exposed to an educational tool influence patient preferences?: The influence of an educational tool on patient preferences assessed by a discrete choice experiment. Patient Education and Counseling, 104(10), 2577-2585
Åpne denne publikasjonen i ny fane eller vindu >>Does being exposed to an educational tool influence patient preferences?: The influence of an educational tool on patient preferences assessed by a discrete choice experiment
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2021 (engelsk)Inngår i: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 104, nr 10, s. 2577-2585Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

Objectives

There is an increased interest in patient preferences informing the development and authorisation of medical products. A requirement for robust and meaningful results of such studies is that patients adequately understand the risks and benefits associated with treatments for which their preferences are elicited. This study aims to determine the influence of an educational tool, compared with traditional written information on patient preferences elicited in a discrete choice experiment (DCE).

Methods

Treatment preferences of Swedish patients with rheumatoid arthritis (RA) were assessed using a DCE. Patients were recruited via clinics, a research panel, and the Swedish Rheumatism Association. Respondents received training materials either as plain written text or as an online educational tool. The educational tool was designed to enhance understanding of the written text by using graphics, pictograms, icon arrays, spoken text, and click-on functions. Data were analysed using random parameter logit models.

Results

675 patients with RA were included in the analysis. The patients received either a written information (n = 358) or information via an educational tool (n = 317). Respondents receiving the educational tool placed relatively more importance on all included side effects in their decision making, compared to respondents receiving the written text, who placed greater importance on treatment effectiveness and administration methods.

Conclusion

Compared to the respondents receiving the written text, the decisions of respondents receiving the educational tool were more influenced by medication side effects. Further research is needed to provide guidance on how and when to use educational tools to inform and elicit patients’ preferences.

Practice implications

The ways in which attributes are presented to patients significantly impacts preferences measured in a DCE.

sted, utgiver, år, opplag, sider
ElsevierElsevier BV, 2021
Emneord
Digital educational tools, Discrete choice experiments, Medical product lifecycle, Regulatory decisions, Rheumatoid arthritis
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-438319 (URN)10.1016/j.pec.2021.03.013 (DOI)000704999800028 ()33757643 (PubMedID)
Prosjekter
IMI-PREFER
Tilgjengelig fra: 2021-03-22 Laget: 2021-03-22 Sist oppdatert: 2024-01-15bibliografisk kontrollert
Eriksson Dufva, Y., Westman, H., Kihlbom, U., Sullivan, P. F. & Johansson, V. (2021). Swedish large-scale schizophrenia study: Why do patients and healthy controls participate?. Schizophrenia Research, 228, 360-366
Åpne denne publikasjonen i ny fane eller vindu >>Swedish large-scale schizophrenia study: Why do patients and healthy controls participate?
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2021 (engelsk)Inngår i: Schizophrenia Research, ISSN 0920-9964, E-ISSN 1573-2509, Vol. 228, s. 360-366Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

Insights into determination of study participation are useful for researchers, clinicians and for ethical considerations. Few large-scale genomic studies have involved motives for enrollment, in schizophrenia patients and unaffected controls. In a case-control study with participants recruited nation-wide in Sweden between 2005 and 2010, semi-structured interviews on motives and attitudes towards future studies were explored in 2767 schizophrenia cases and 4466 controls. In qualitative and quantitative analyses, we identified altruism as a major determinant in 84% of the cases and in 97% of the controls. Among pre-defined subcategories of altruism, cases with schizophrenia were more often referring to science for example, ‘I want to help science move forward’ or ‘I want better medications for future generations’ in relation to unaffected controls that were more often referring to common humanity such as ‘It is my duty and responsibility to help’. In schizophrenia, motives related to personal benefit and social influence were reported by 9% and 5%. We conclude that individuals with schizophrenia frequently report altruistic motives for study participation, almost to the same extent as unaffected controls. In contrast to unfortunate stereotypes, people with schizophrenia wish others to benefit from their experiences with severe mental illness and should not be refrained from participating in genomic research.

sted, utgiver, år, opplag, sider
Elsevier, 2021
Emneord
Schizophrenia, Genetic research, Ethics, Altruism, Study participation, Vulnerable populations
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-433927 (URN)10.1016/j.schres.2021.01.007 (DOI)000631081000057 ()33548836 (PubMedID)
Forskningsfinansiär
Forte, Swedish Research Council for Health, Working Life and Welfare
Tilgjengelig fra: 2021-02-03 Laget: 2021-02-03 Sist oppdatert: 2024-01-15bibliografisk kontrollert
Russo, S., Monzani, D., Pinto, C. A., Vergani, L., Marton, G., Falahee, M., . . . Pravettoni, G. (2021). Taking into Account Patient Preferences: A Consensus Study on the Assessment of Psychological Dimensions Within Patient Preference Studies. Patient Preference and Adherence, 15, 1331-1345
Åpne denne publikasjonen i ny fane eller vindu >>Taking into Account Patient Preferences: A Consensus Study on the Assessment of Psychological Dimensions Within Patient Preference Studies
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2021 (engelsk)Inngår i: Patient Preference and Adherence, E-ISSN 1177-889X, Vol. 15, s. 1331-1345Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

Patient preferences are gaining recognition among key stakeholders involved in benefit-risk decision-making along the medical product lifecycle. However, one of the main challenges of integrating patient preferences in benefit-risk decision-making is understanding differences in patient preference, which may be attributable to clinical characteristics (eg age, medical history) or psychosocial factors. Measuring the latter may provide valuable information to decision-makers but there is limited guidance regarding which psychological dimensions may influence patient preferences and which psychological instruments should be considered for inclusion in patient preference studies. This paper aims to provide such guidance by advancing evidence and consensus-based recommendations and considerations. Findings of a recent systematic review on psychological constructs having an impact on patients’ preferences and health-related decisions were expanded with input from an expert group (n = 11). These data were then used as the basis for final recommendations developed through two rounds of formal evaluation via an online Delphi consensus process involving international experts in the field of psychology, medical decision-making, and risk communication (n = 27). Three classes of recommendations emerged. Eleven psychological constructs reached consensus to be recommended for inclusion with the strongest consensus existing for health literacy, numeracy, illness perception and treatment-related beliefs. We also proposed a set of descriptive and checklist criteria to appraise available psychological measures to assist researchers and other stakeholders in including psychological assessment when planning patient preference studies. These recommendations can guide researchers and other stakeholders when designing and interpreting patient preference studies with a potential high impact in clinical practice and medical product benefit-risk decision-making processes.

Emneord
patient preferences, patients reported outcomes, psychological assessment, decision-making
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-446368 (URN)10.2147/PPA.S261615 (DOI)000666578900001 ()34177261 (PubMedID)
Prosjekter
IMI-PREFER
Forskningsfinansiär
EU, Horizon 2020
Tilgjengelig fra: 2021-06-18 Laget: 2021-06-18 Sist oppdatert: 2024-01-17bibliografisk kontrollert
Falahee, M., Simons, G., DiSantostefano, R., Valor Méndez, L., Radawski, C., Englbrecht, M., . . . Raza, K. (2021). Treatment preferences for preventive interventions for rheumatoid arthritis: protocol of a mixed methods case study for the Innovative Medicines Initiative PREFER project. BMJ Open, 11(4), Article ID e045851.
Åpne denne publikasjonen i ny fane eller vindu >>Treatment preferences for preventive interventions for rheumatoid arthritis: protocol of a mixed methods case study for the Innovative Medicines Initiative PREFER project
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2021 (engelsk)Inngår i: BMJ Open, E-ISSN 2044-6055, Vol. 11, nr 4, artikkel-id e045851Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

Introduction

Amidst growing consensus that stakeholder decision-making during drug development should be informed by an understanding of patient preferences, the Innovative Medicines Initiative project ‘Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle’ (PREFER) is developing evidence-based recommendations about how and when patient preferences should be integrated into the drug life cycle. This protocol describes a PREFER clinical case study which compares two preference elicitation methodologies across several populations and provides information about benefit–risk trade-offs by those at risk of rheumatoid arthritis (RA) for preventive interventions.

Methods and analysis

This mixed methods study will be conducted in three countries (UK, Germany, Romania) to assess preferences of (1) first-degree relatives (FDRs) of patients with RA and (2) members of the public. Focus groups using nominal group techniques (UK) and ranking surveys (Germany and Romania) will identify and rank key treatment attributes. Focus group transcripts will be analysed thematically using the framework method and average rank orders calculated. These results will inform the treatment attributes to be assessed in a survey including a discrete choice experiment (DCE) and a probabilistic threshold technique (PTT). The survey will also include measures of sociodemographic variables, health literacy, numeracy, illness perceptions and beliefs about medicines. The survey will be administered to (1) 400 FDRs of patients with RA (UK); (2) 100 FDRs of patients with RA (Germany); and (3) 1000 members of the public in each of UK, Germany and Romania. Logit-based approaches will be used to analyse the DCE and imputation and interval regression for the PTT.

Ethics and dissemination

This study has been approved by the London-Hampstead Research Ethics Committee (19/LO/0407) and the Ethics Committee of the Friedrich-Alexander-Universität Erlangen-Nürnberg (92_17 B). The protocol has been approved by the PREFER expert review board. The results will be disseminated widely and will inform the PREFER recommendations.

sted, utgiver, år, opplag, sider
BMJ Publishing Group LtdBMJ, 2021
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-439954 (URN)10.1136/bmjopen-2020-045851 (DOI)000639385400003 ()
Prosjekter
IMI-PREFER
Tilgjengelig fra: 2021-04-12 Laget: 2021-04-12 Sist oppdatert: 2024-01-15bibliografisk kontrollert
Dawson, A., Isaacs, D., Jansen, M., Jordens, C., Kerridge, I., Kihlbom, U., . . . Skowronski, G. (2020). An Ethics Framework for Making Resource Allocation Decisions Within Clinical Care: Responding to COVID-19. Journal of Bioethical Inquiry, 17(4), 749-755
Åpne denne publikasjonen i ny fane eller vindu >>An Ethics Framework for Making Resource Allocation Decisions Within Clinical Care: Responding to COVID-19
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2020 (engelsk)Inngår i: Journal of Bioethical Inquiry, ISSN 1176-7529, E-ISSN 1872-4353, Vol. 17, nr 4, s. 749-755Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

On March, 24, 2020, 818 cases of COVID-19 had been reported in New South Wales, Australia, and new cases were increasing at an exponential rate. In anticipation of resource constraints arising in clinical settings as a result of the COVID-19 pandemic, a working party of ten ethicists (seven clinicians and three full-time academics) was convened at the University of Sydney to draft an ethics framework to support resource allocation decisions. The framework guides decision-makers using a question-and-answer format, in language that avoids philosophical and medical technicality. The working party met five times over the following week and then submitted a draft Framework for consideration by two groups of intensivists and one group of academic ethicists. It was also presented to a panel on a national current affairs programme. The Framework was then revised on the basis of feedback from these sources and made publicly available online on April 3, ten days after the initial meeting. The framework is published here in full to stimulate ongoing discussion about rapid development of user-friendly clinical ethics resources in ongoing and future pandemics.

HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-419853 (URN)10.1007/s11673-020-10007-w (DOI)000562745200036 ()32840833 (PubMedID)
Tilgjengelig fra: 2020-09-16 Laget: 2020-09-16 Sist oppdatert: 2021-05-06bibliografisk kontrollert
Matar, A., Höglund, A. T., Segerdahl, P. & Kihlbom, U. (2020). Autonomous decisions by couples in reproductive care. BMC Medical Ethics, 21(1), Article ID 30.
Åpne denne publikasjonen i ny fane eller vindu >>Autonomous decisions by couples in reproductive care
2020 (engelsk)Inngår i: BMC Medical Ethics, E-ISSN 1472-6939, Vol. 21, nr 1, artikkel-id 30Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

Background Preconception Expanded Carrier Screening (ECS) is a genetic test offered to a general population or to couples who have no known risk of recessive and X-linked genetic diseases and are interested in becoming parents. A test may screen for carrier status of several autosomal recessive diseases at one go. Such a program has been piloted in the Netherlands and may become a reality in more European countries in the future. The ethical rationale for such tests is that they enhance reproductive autonomy. The dominant conception of autonomy is individual-based. However, at the clinic, people deciding on preconception ECS will be counselled together and are expected to make a joint decision, as a couple. The aim of the present study was to develop an understanding of autonomous decisions made by couples in the context of reproductive technologies in general and of preconception ECS in particular. Further, to shed light on what occurs in reproductive clinics and suggest concrete implications for healthcare professionals. Main text Based on the shift in emphasis from individual autonomy to relational autonomy, a notion of couple autonomy was suggested and some features of this concept were outlined. First, that both partners are individually autonomous and that the decision is reached through a communicative process. In this process each partner should feel free to express his or her concerns and preferences, so no one partner dominates the discussion. Further, there should be adequate time for the couple to negotiate possible differences and conclude that the decision is right for them. The final decision should be reached through consensus of both partners without coercion, manipulation or miscommunication. Through concrete examples, the suggested notion of couple autonomy was applied to diverse clinical situations. Conclusions A notion of couple autonomy can be fruitful for healthcare professionals by structuring their attention to and support of a couple who is required to make an autonomous joint decision concerning preconception ECS. A normative implication for healthcare staff is to allow the necessary time for decision-making and to promote a dialogue that can increase the power of the weaker part in a relationship.

sted, utgiver, år, opplag, sider
BioMed Central, 2020
Emneord
Couple autonomy, Expanded carrier screening, Preconception, Relational autonomy, Reproductive autonomy
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-410053 (URN)10.1186/s12910-020-00470-w (DOI)000529954100001 ()32334575 (PubMedID)
Tilgjengelig fra: 2020-05-07 Laget: 2020-05-07 Sist oppdatert: 2024-07-04bibliografisk kontrollert
Schölin Bywall, K., Kihlbom, U., Hansson, M., Falahee, M., Raza, K., Baecklund, E. & Veldwijk, J. (2020). Patient preferences on rheumatoid arthritis second-line treatment: a discrete choice experiment of Swedish patients. Arthritis Research & Therapy , 22, Article ID 288.
Åpne denne publikasjonen i ny fane eller vindu >>Patient preferences on rheumatoid arthritis second-line treatment: a discrete choice experiment of Swedish patients
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2020 (engelsk)Inngår i: Arthritis Research & Therapy , E-ISSN 1478-6362, Vol. 22, artikkel-id 288Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

Background

Preference assessments of patients with rheumatoid arthritis can support clinical therapeutic decisions for including biologic and targeted synthetic medicines to use. This study assesses patient preferences for attributes of second-line therapies and heterogeneity within these preferences to estimate the relative importance of treatment characteristics and to calculate the minimum benefit levels patients require to accept higher levels of side effects.

Methods

Between November 2018 to August 2019, patients with rheumatoid arthritis were recruited to a survey containing demographic and disease-related questions as well as a discrete choice experiment to measure their preferences for second-line therapies using biologics or Janus kinases inhibitors. Treatment characteristics included were route of administration, frequency of use, probability of mild short-term side effects, probability of side effects changing appearance, probability of psychological side effects, probability of severe side effects and effectiveness of treatment.

Results

A total of 358 patients were included in the analysis. A latent class analysis revealed three preference patterns: (1) treatment effectiveness as the single most important attribute, (2) route of administration as the most important attribute, closely followed by frequency of use and psychological side effects and (3) severe side effects as the most important attribute followed by psychological side effects. In addition, disease duration and mild side effects influenced the patients’ choices.

Conclusion

Respondents found either effectiveness, route of administration or severe side effects as the most important attribute. Patients noting effectiveness as most important were more willing than other patients to accept higher risks of side effects.

Emneord
Discrete choice experiment, Patient preferences, Rheumatoid arthritis, Second-line treatment
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-429228 (URN)10.1186/s13075-020-02391-w (DOI)000600277400001 ()33341117 (PubMedID)
Prosjekter
IMI-PREFER
Forskningsfinansiär
EU, Horizon 2020
Tilgjengelig fra: 2020-12-21 Laget: 2020-12-21 Sist oppdatert: 2024-07-04bibliografisk kontrollert
Prosjekter
Den genetiska riskinformationens etik för individ och samhälle [M13-0260:1_RJ]; Uppsala universitetWorkshop Ansvar i förändring - The Network of Ethics of Family, Sandhamn 2014 [F14-1206:1_RJ]; Uppsala universitetMetaboliska sårbarheter för personcentrerade terapeutiska approacher inom akut myeloisk leukemi [2019-00903_VR]; Uppsala universitet
Organisasjoner
Identifikatorer
ORCID-id: ORCID iD iconorcid.org/0000-0002-3823-8263