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Ryll, Bettina
Publications (10 of 12) Show all publications
Ryll, B. (2019). No other interest can take precedence: a patient's perspective on oncology drug development [Letter to the editor]. Nature Reviews Clinical Oncology, 16(8), 461-462
Open this publication in new window or tab >>No other interest can take precedence: a patient's perspective on oncology drug development
2019 (English)In: Nature Reviews Clinical Oncology, ISSN 1759-4774, E-ISSN 1759-4782, Vol. 16, no 8, p. 461-462Article in journal, Letter (Other academic) Published
Place, publisher, year, edition, pages
Nature Publishing Group, 2019
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:uu:diva-391428 (URN)10.1038/s41571-019-0230-4 (DOI)000476653800002 ()31110270 (PubMedID)
Available from: 2019-10-03 Created: 2019-10-03 Last updated: 2019-10-03Bibliographically approved
Makady, A., Kalf, R. R. J., Ryll, B., Spurrier, G., de Boer, A., Hillege, H., . . . Goettsch, W. (2018). Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study. Health and Quality of Life Outcomes, 16, Article ID 222.
Open this publication in new window or tab >>Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study
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2018 (English)In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 16, article id 222Article in journal (Refereed) Published
Abstract [en]

Purpose: Development of innovative drugs for melanoma is occurring rapidly. Incremental gains in overall survival amongst innovative products may be difficult to measure in clinical trials, and their use may be associated with increased toxicity profiles. Therefore, HTA agencies increasingly require information on HRQoL for the assessment of such drugs. This study explored the feasibility of social media to assess patient perspectives on HRQoL in melanoma, and whether current cancer- and melanoma-specific HRQoL questionnaires represent these perspectives.

Methods: A survey was distributed on the social media channels of Melanoma Patient Network Europe to assess melanoma patients' perspectives regarding HRQoL. Two researchers independently conducted content analysis to identify key themes, which were subsequently compared to questions from one current cancer-specific and two melanoma-specific HRQoL questionnaires (i.e. EORTC QLQ-C30, EORTC QLQ-MEL38, FACT-M).

Results: In total, 72 patients and 17 carers completed the survey. Patients indicated that family, having a normal life, and enjoying life were the three most important aspects of HRQoL for them. Carers indicated that being capable, having manageable adverse events, and being pain-free were the three most important aspects of HRQoL for patients. Respondents seem to find some questions from HRQoL questionnaires relevant (e.g. Have you felt able to carry on with things as normal?') and others less relevant (e.g. Have you had swelling near your melanoma site?'). Additionally, wording may differ between patients and HRQoL questionnaires, whereby patients generally use a more positive tone.

Conclusions: Social media may provide a valuable tool in assessing patient perspectives regarding HRQoL. However, differences seem to emerge between patient and carer perspectives. Additionally, patient perspectives did not seem to fully correlate to questions posed in cancer- (i.e. EORTC QLQ-C30) and melanoma-specific (i.e. EORTC QLQ-MEL38, FACT-M) HRQoL questionnaires examined.

Place, publisher, year, edition, pages
BMC, 2018
Keywords
Social media, Health related quality of life, Real-world data, Patient perspectives
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-372389 (URN)10.1186/s12955-018-1047-z (DOI)000451742300001 ()30497502 (PubMedID)
Funder
EU, FP7, Seventh Framework Programme, 115546
Available from: 2019-01-07 Created: 2019-01-07 Last updated: 2019-01-07Bibliographically approved
Makady, A., Kalf, R., Ryll, B., Spurrier, G., de Boer, A., Hillege, H., . . . Goettsch, W. (2018). Using social media to collect patient perspectives on quality of life: A feasibility study. Pharmacoepidemiology and Drug Safety, 27(Suppl. 2), 56-56, Article ID 117.
Open this publication in new window or tab >>Using social media to collect patient perspectives on quality of life: A feasibility study
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2018 (English)In: Pharmacoepidemiology and Drug Safety, ISSN 1053-8569, E-ISSN 1099-1557, Vol. 27, no Suppl. 2, p. 56-56, article id 117Article in journal, Meeting abstract (Other academic) Published
Place, publisher, year, edition, pages
WILEY, 2018
National Category
Pharmacology and Toxicology
Identifiers
urn:nbn:se:uu:diva-364838 (URN)10.1002/pds.4629 (DOI)000441893800114 ()
Available from: 2018-11-05 Created: 2018-11-05 Last updated: 2018-11-05Bibliographically approved
Geissler, J., Ryll, B., di Priolo, S. L. & Uhlenhopp, M. (2017). Improving Patient Involvement in Medicines Research and Development:: A Practical Roadmap. Therapeutic Innovation and Regulatory Science, 51(5), 612-619
Open this publication in new window or tab >>Improving Patient Involvement in Medicines Research and Development:: A Practical Roadmap
2017 (English)In: Therapeutic Innovation and Regulatory Science, ISSN 2168-4790, E-ISSN 2168-4804, Vol. 51, no 5, p. 612-619Article in journal (Refereed) Published
Abstract [en]

The value of patient involvement (PI) in medicines research and development (R&D) is increasingly recognized by all health stakeholders. Despite numerous ongoing PI initiatives, PI so far lacks structure and consistency in approach. Limited formal documentation of PI activities further hampers the sharing of experience and learnings, preventing timely and systematic implementation. This article summarizes the outcomes of several multistakeholder discussions during 2013-2016 in a practical roadmap for PI in medicines R&D. The roadmap highlights specific opportunities for PI along the 4 key stages of the medicines R&D life cycle and is illustrated with concrete examples. This roadmap's aim is to provide a tool to facilitate PI during medicines research and development and is being shared to encourage implementation and further refinement.

Place, publisher, year, edition, pages
Sage Publications, 2017
Keywords
patient involvement roadmap, patient input
National Category
Social and Clinical Pharmacy
Identifiers
urn:nbn:se:uu:diva-335631 (URN)10.1177/2168479017706405 (DOI)000409535200011 ()
Available from: 2017-12-11 Created: 2017-12-11 Last updated: 2018-01-13Bibliographically approved
Di Paolo, A., Sarkozy, F., Ryll, B. & Siebert, U. (2017). Personalized medicine in Europe: not yet personal enough?. BMC Health Services Research, 17, Article ID 289.
Open this publication in new window or tab >>Personalized medicine in Europe: not yet personal enough?
2017 (English)In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 17, article id 289Article in journal (Refereed) Published
Abstract [en]

Background: Personalized medicine has the potential to allow patients to receive drugs specific to their individual disease, and to increase the efficiency of the healthcare system. There is currently no comprehensive overview of personalized medicine, and this research aims to provide an overview of the concept and definition of personalized medicine in nine European countries. Methods: A targeted literature review of selected health databases and grey literature was conducted to collate information regarding the definition, process, use, funding, impact and challenges associated with personalized medicine. In-depth qualitative interviews were carried out with experts with health technology assessment, clinical provisioning, payer, academic, economic and industry experience, and with patient organizations. Results: We identified a wide range of definitions of personalized medicine, with most studies referring to the use of diagnostics and individual biological information such as genetics and biomarkers. Few studies mentioned patients' needs, beliefs, behaviour, values, wishes, utilities, environment and circumstances, and there was little evidence in the literature for formal incorporation of patient preferences into the evaluation of new medicines. Most interviewees described approaches to stratification and segmentation of patients based on genetic markers or diagnostics, and few mentioned health-related quality of life. Conclusions: The published literature on personalized medicine is predominantly focused on patient stratification according to individual biological information. Although these approaches are important, incorporation of environmental factors and patients' preferences in decision making is also needed. In future, personalized medicine should move from treating diseases to managing patients, taking into account all individual factors.

Keywords
Personalized medicine, Definition, Patient stratification, Patient preferences
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:uu:diva-322802 (URN)10.1186/s12913-017-2205-4 (DOI)000399639500005 ()28424057 (PubMedID)
Available from: 2017-09-13 Created: 2017-09-13 Last updated: 2022-09-15Bibliographically approved
Makady, A., Stegenga, H., Ciaglia, A., Debray, T. P. A., Lees, M., Happich, M., . . . Goettsch, W. (2017). Practical implications of using real-world evidence (RWE) in comparative effectiveness research: learnings from IMI-GetReal. Journal of Comparative Effectiveness Research, 6(6), 485-490
Open this publication in new window or tab >>Practical implications of using real-world evidence (RWE) in comparative effectiveness research: learnings from IMI-GetReal
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2017 (English)In: Journal of Comparative Effectiveness Research, ISSN 2042-6305, E-ISSN 2042-6313, Vol. 6, no 6, p. 485-490Article in journal, Editorial material (Other academic) Published
Keywords
real-world evidence, non-randomized trials, comparative effectiveness research, health technology assessment
National Category
Computer Sciences Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:uu:diva-346975 (URN)10.2217/cer-2017-0044 (DOI)000412431000001 ()28857631 (PubMedID)
Available from: 2018-03-28 Created: 2018-03-28 Last updated: 2018-03-28Bibliographically approved
Kalf, R., Makady, A., Ryll, B., Spurrier, G. & Goettsch, W. (2016). Social Media: A Valuable Tool To Assess Patient Perspectives Regarding Quality Of Life. Value in Health, 19(7), A749-A749
Open this publication in new window or tab >>Social Media: A Valuable Tool To Assess Patient Perspectives Regarding Quality Of Life
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2016 (English)In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 19, no 7, p. A749-A749Article in journal (Refereed) Published
Place, publisher, year, edition, pages
ELSEVIER SCIENCE INC, 2016
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:uu:diva-321259 (URN)000396606302504 ()
Available from: 2017-05-02 Created: 2017-05-02 Last updated: 2017-05-02Bibliographically approved
Ryll, B., Sanchez, S., Haitina, T., Tafforeau, P. & Ahlberg, P. E. (2014). The genome of Callorhinchus and the fossil record: a new perspective on SCPP gene evolution in gnathostomes. Evolution & Development, 16(3), 123-124
Open this publication in new window or tab >>The genome of Callorhinchus and the fossil record: a new perspective on SCPP gene evolution in gnathostomes
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2014 (English)In: Evolution & Development, ISSN 1520-541X, E-ISSN 1525-142X, Vol. 16, no 3, p. 123-124Article in journal, Editorial material (Other academic) Published
National Category
Evolutionary Biology
Identifiers
urn:nbn:se:uu:diva-228904 (URN)10.1111/ede.12071 (DOI)000337506800001 ()
Available from: 2014-07-22 Created: 2014-07-22 Last updated: 2017-12-05Bibliographically approved
Poelstra, J. W., Vijay, N., Bossu, C. M., Lantz, H., Ryll, B., Mueller, I., . . . Wolf, J. B. W. (2014). The genomic landscape underlying phenotypic integrity in the face of gene flow in crows. Science, 344(6190), 1410-1414
Open this publication in new window or tab >>The genomic landscape underlying phenotypic integrity in the face of gene flow in crows
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2014 (English)In: Science, ISSN 0036-8075, E-ISSN 1095-9203, Vol. 344, no 6190, p. 1410-1414Article in journal (Refereed) Published
Abstract [en]

The importance, extent, and mode of interspecific gene flow for the evolution of species has long been debated. Characterization of genomic differentiation in a classic example of hybridization between all-black carrion crows and gray-coated hooded crows identified genome-wide introgression extending far beyond the morphological hybrid zone. Gene expression divergence was concentrated in pigmentation genes expressed in gray versus black feather follicles. Only a small number of narrow genomic islands exhibited resistance to gene flow. One prominent genomic region (<2 megabases) harbored 81 of all 82 fixed differences (of 8.4 million single-nucleotide polymorphisms in total) linking genes involved in pigmentation and in visual perception-a genomic signal reflecting color-mediated prezygotic isolation. Thus, localized genomic selection can cause marked heterogeneity in introgression landscapes while maintaining phenotypic divergence.

National Category
Evolutionary Biology Genetics
Identifiers
urn:nbn:se:uu:diva-228535 (URN)10.1126/science.1253226 (DOI)000337531700043 ()
Available from: 2014-07-17 Created: 2014-07-16 Last updated: 2017-12-05Bibliographically approved
Sanchez, S., Dupret, V., Tafforeau, P., Trinajstic, K. M., Ryll, B., Gouttenoire, P.-J., . . . Ahlberg, P. E. (2013). 3D Microstructural Architecture of Muscle Attachments in Extant and Fossil Vertebrates Revealed by Synchrotron Microtomography. PLOS ONE, 8(2), e56992
Open this publication in new window or tab >>3D Microstructural Architecture of Muscle Attachments in Extant and Fossil Vertebrates Revealed by Synchrotron Microtomography
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2013 (English)In: PLOS ONE, E-ISSN 1932-6203, Vol. 8, no 2, p. e56992-Article in journal (Refereed) Published
Abstract [en]

Background: Firm attachments binding muscles to skeleton are crucial mechanical components of the vertebrate body. These attachments (entheses) are complex three-dimensional structures, containing distinctive arrangements of cells and fibre systems embedded in the bone, which can be modified during ontogeny. Until recently it has only been possible to obtain 2D surface and thin section images of entheses, leaving their 3D histology largely unstudied except by extrapolation from 2D data. Entheses are frequently preserved in fossil bones, but sectioning is inappropriate for rare or unique fossil material.

Methodology/Principal Findings: Here we present the first non-destructive 3D investigation, by propagation phase contrast synchrotron microtomography (PPC-SR mu CT), of enthesis histology in extant and fossil vertebrates. We are able to identify entheses in the humerus of the salamander Desmognathus from the organization of bone-cell lacunae and extrinsic fibres. Statistical analysis of the lacunae differentiates types of attachments, and the orientation of the fibres, reflect the approximate alignment of the muscle. Similar histological structures, including ontogenetically related pattern changes, are perfectly preserved in two 380 million year old fossil vertebrates, the placoderm Compagopiscis croucheri and the sarcopterygian fish Eusthenopteron foordi.

Conclusions/Significance: We are able to determine the position of entheses in fossil vertebrates, the approximate orientation of the attached muscles, and aspects of their ontogenetic histories, from PPC-SRmCT data. Sub-micron microtomography thus provides a powerful tool for studying the structure, development, evolution and palaeobiology of muscle attachments.

National Category
Natural Sciences
Identifiers
urn:nbn:se:uu:diva-197999 (URN)10.1371/journal.pone.0056992 (DOI)000315561400020 ()
Funder
EU, European Research Council, 233111Knut and Alice Wallenberg Foundation
Available from: 2013-04-08 Created: 2013-04-08 Last updated: 2021-06-14Bibliographically approved
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