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  • 1.
    Di Paolo, Antonello
    et al.
    Univ Pisa, Sect Pharmacol, Dept Clin & Expt Med, Via Roma 55, I-56126 Pisa, Italy.
    Sarkozy, Francois
    FSNB Hlth & Care, Carenity, Paris, France.
    Ryll, Bettina
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology. Melanoma Patient Network Europe.
    Siebert, Uwe
    UMIT Univ Hlth Sci Med Informat & Technol, Dept Publ Hlth Hlth Serv Res & Hlth Technol Asses, Hall In Tirol, Austria.;ONCOTYROL Ctr Personalized Canc Med, Area Hlth Technol Assessment, Innsbruck, Austria..
    Personalized medicine in Europe: not yet personal enough?2017In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 17, article id 289Article in journal (Refereed)
    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.

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  • 2.
    Geissler, Jan
    et al.
    European Patients Acad Therapeut Innovat, Rothenanger 1b, D-85521 Riemerling, Germany..
    Ryll, Bettina
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology. Melanoma Patient Network Europe, Uppsala, Sweden..
    di Priolo, Susanna Leto
    Novartis Oncol Reg Europe, Patient Strategy, Haematol & Profess Relat, Milan, Italy..
    Uhlenhopp, Mary
    Amgen Europe GmbH, Zug, Switzerland.;Shire, Global Advocacy, Oncol & Immunol, Zug, Switzerland..
    Improving Patient Involvement in Medicines Research and Development:: A Practical Roadmap2017In: Therapeutic Innovation and Regulatory Science, ISSN 2168-4790, E-ISSN 2168-4804, Vol. 51, no 5, p. 612-619Article in journal (Refereed)
    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.

  • 3.
    Kalf, R.
    et al.
    Natl Healthcare Inst ZIN, Diemen, Netherlands..
    Makady, A.
    Natl Healthcare Inst ZIN, Diemen, Netherlands..
    Ryll, Bettina
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology. Melanoma Patient Network Europe, Uppsala, Sweden..
    Spurrier, G.
    Melanoma Patient Network Europe, Uppsala, Sweden.;Melanome France, Uppsala, Sweden..
    Goettsch, W.
    Natl Hlth Care Inst, Diemen, Netherlands..
    Social Media: A Valuable Tool To Assess Patient Perspectives Regarding Quality Of Life2016In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 19, no 7, p. A749-A749Article in journal (Refereed)
  • 4.
    Makady, Amr
    et al.
    Zorginst Nederland, Eekholt 4, NL-1112 XH Diemen, Netherlands;Univ Utrecht, Dept Pharmacoepidemiol & Clin Pharmacol, Utrecht, Netherlands.
    Kalf, Rachel R. J.
    Zorginst Nederland, Eekholt 4, NL-1112 XH Diemen, Netherlands.
    Ryll, Bettina
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology. Melanoma Patient Network Europe, Uppsala, Sweden.
    Spurrier, Gilliosa
    Melanoma Patient Network Europe, Uppsala, Sweden.
    de Boer, Anthonius
    Univ Utrecht, Dept Pharmacoepidemiol & Clin Pharmacol, Utrecht, Netherlands.
    Hillege, Hans
    Univ Med Ctr Groningen, Dept Epidemiol, Groningen, Netherlands.
    Klungel, Olaf H.
    Univ Utrecht, Dept Pharmacoepidemiol & Clin Pharmacol, Utrecht, Netherlands.
    Goettsch, Wim
    Zorginst Nederland, Eekholt 4, NL-1112 XH Diemen, Netherlands;Univ Utrecht, Dept Pharmacoepidemiol & Clin Pharmacol, Utrecht, Netherlands.
    Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study2018In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 16, article id 222Article in journal (Refereed)
    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.

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  • 5.
    Makady, Amr
    et al.
    Zorginst Nederland, Diemen, Netherlands;Univ Utrecht, Utrecht, Netherlands.
    Kalf, Rachel
    Zorginst Nederland, Diemen, Netherlands;Univ Utrecht, Utrecht, Netherlands.
    Ryll, Bettina
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology. Melanoma Patient Network Europe, Brussels, Belgium.
    Spurrier, Gilliosa
    Melanoma Patient Network Europe, Brussels, Belgium.
    de Boer, Anthonius
    Univ Utrecht, Utrecht, Netherlands.
    Hillege, Hans
    Univ Med Ctr Groningen, Groningen, Netherlands.
    Klungel, Olaf
    Univ Utrecht, Utrecht, Netherlands.
    Goettsch, Wim
    Zorginst Nederland, Diemen, Netherlands;Univ Utrecht, Utrecht, Netherlands.
    Using social media to collect patient perspectives on quality of life: A feasibility study2018In: Pharmacoepidemiology and Drug Safety, ISSN 1053-8569, E-ISSN 1099-1557, Vol. 27, no Suppl. 2, p. 56-56, article id 117Article in journal (Other academic)
  • 6.
    Makady, Amr
    et al.
    Natl Healthcare Inst ZIN, Diemen, Netherlands.;Univ Utrecht, Dept Pharmacoepidemiol & Clin Pharmacotherapy, Utrecht, Netherlands..
    Stegenga, Heather
    Natl Inst Hlth & Care Excellence NICE, London, England..
    Ciaglia, Antonio
    Int Alliance Patients Org, London, England..
    Debray, Thomas P. A.
    Univ Med Ctr Utrecht, Julius Ctr Hlth Sci & Primary Care, Utrecht, Netherlands.;Univ Med Ctr Utrecht, Cochrane Netherlands, Utrecht, Netherlands..
    Lees, Michael
    Bristol Myers Squibb, Paris, France..
    Happich, Michael
    Eli Lilly, Hamburg, Germany..
    Ryll, Bettina
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology. Melanoma Patient Network Europe, Uppsala, Sweden.
    Abrams, Keith
    Univ Leicester, Dept Hlth Sci, Leicester, Leics, England..
    Thwaites, Rob
    Takeda, London, England..
    Garner, Sarah
    Natl Inst Hlth & Care Excellence NICE, London, England..
    Jonsson, Pall
    Natl Inst Hlth & Care Excellence NICE, London, England..
    Goettsch, Wim
    Natl Healthcare Inst ZIN, Diemen, Netherlands.;Univ Utrecht, Dept Pharmacoepidemiol & Clin Pharmacotherapy, Utrecht, Netherlands..
    Practical implications of using real-world evidence (RWE) in comparative effectiveness research: learnings from IMI-GetReal2017In: Journal of Comparative Effectiveness Research, ISSN 2042-6305, E-ISSN 2042-6313, Vol. 6, no 6, p. 485-490Article in journal (Other academic)
  • 7.
    Poelstra, Jelmer W.
    et al.
    Uppsala University, Science for Life Laboratory, SciLifeLab. Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Ecology and Genetics, Evolutionary Biology.
    Vijay, Nagarjun
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Ecology and Genetics, Evolutionary Biology. Uppsala University, Science for Life Laboratory, SciLifeLab.
    Bossu, Christen M.
    Uppsala University, Science for Life Laboratory, SciLifeLab. Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Ecology and Genetics, Evolutionary Biology.
    Lantz, Henrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Biochemistry and Microbiology. Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Cell and Molecular Biology, Computational and Systems Biology. Uppsala University, Science for Life Laboratory, SciLifeLab.
    Ryll, Bettina
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Mueller, I.
    Baglione, V.
    Unneberg, P.
    Wikelski, M.
    Grabherr, Manfred G.
    Uppsala University, Science for Life Laboratory, SciLifeLab. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Biochemistry and Microbiology.
    Wolf, Jochen B. W.
    Uppsala University, Science for Life Laboratory, SciLifeLab. Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Ecology and Genetics, Evolutionary Biology.
    The genomic landscape underlying phenotypic integrity in the face of gene flow in crows2014In: Science, ISSN 0036-8075, E-ISSN 1095-9203, Vol. 344, no 6190, p. 1410-1414Article in journal (Refereed)
    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.

  • 8.
    Ryll, Bettina
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology. Melanoma Patient Network Europe, Uppsala, Sweden.
    No other interest can take precedence: a patient's perspective on oncology drug development2019In: Nature Reviews Clinical Oncology, ISSN 1759-4774, E-ISSN 1759-4782, Vol. 16, no 8, p. 461-462Article in journal (Other academic)
  • 9.
    Ryll, Bettina
    et al.
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Sanchez, Sophie
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Haitina, Tatjana
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Tafforeau, Paul
    Ahlberg, Per Erik
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    The genome of Callorhinchus and the fossil record: a new perspective on SCPP gene evolution in gnathostomes2014In: Evolution & Development, ISSN 1520-541X, E-ISSN 1525-142X, Vol. 16, no 3, p. 123-124Article in journal (Other academic)
  • 10.
    Sanchez, Sophie
    et al.
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Dupret, Vincent
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Ryll, Bettina
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Trinajstic, Kate
    Curtin University, Western Australia.
    Wretman, Lovisa
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Zylberberg, Louise
    Université Pierre et Marie Curie, UPMC, Paris, France.
    Tafforeau, Paul
    European Synchrotron Radiation Facility, Grenoble, France.
    Ahlberg, Per
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Fossil bone histology revealed in 3D thanks to the synchrotron light: palaeobiological implications2011Conference paper (Refereed)
  • 11.
    Sanchez, Sophie
    et al.
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Dupret, Vincent
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Ryll, Bettina
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Trinajstic, Kate
    Curti University, Western Australia.
    Wretman, Lovisa
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Zylberberg, Louise
    Université Pierre et Marie Curie, UPMC, Paris, France.
    Tafforeau, Paul
    European Synchrotron Radiation Facility, Grenoble, France.
    Ahlberg, Per
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Synchrotron virtual palaeohistology: a new tool for studying the evolution of bone microstructures in 3D2011Conference paper (Refereed)
  • 12.
    Sanchez, Sophie
    et al.
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Dupret, Vincent
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology.
    Tafforeau, Paul
    Trinajstic, Katherine M.
    Ryll, Bettina
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Gouttenoire, Pierre-Jean
    Wretman, Lovisa
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    Zylberberg, Louise
    Peyrin, Francoise
    Ahlberg, Per E.
    Uppsala University, Disciplinary Domain of Science and Technology, Biology, Department of Organismal Biology, Evolution and Developmental Biology.
    3D Microstructural Architecture of Muscle Attachments in Extant and Fossil Vertebrates Revealed by Synchrotron Microtomography2013In: PLOS ONE, E-ISSN 1932-6203, Vol. 8, no 2, p. e56992-Article in journal (Refereed)
    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.

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