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1. Ethics, law and governance of biobanking
: national, European, and international approaches
by Mascalzoni, Deborah
2015, International library of ethics, law and technology, ISBN 9401795738, Volume 14
standards | Genetic Privacy | Internationality | Biological Specimen Banks | Genetic Research | legislation & jurisprudence | Health Policy | ethics
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2. Ethics, Law and Governance of Biobanking
: National, European and International Approaches
by Mascalzoni, Deborah and SpringerLink (Online service)
2015, The International Library of Ethics, Law and Technology, ISBN 9401795738, Volume 14
Biobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial... 
Medicine | Ethics | Civil law | Medical ethics
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3. Full Text Reverse Discrimination For Psychiatric Genetic Studies In Population-Based Biobanks
by Mascalzoni, Deborah and Medicinska fakulteten and Medicinska och farmaceutiska vetenskapsområdet and Uppsala universitet and Institutionen för folkhälso- och vårdvetenskap and Centrum för forsknings- och bioetik
European Neuropsychopharmacology, ISSN 0924-977X, 2017, Volume 27, pp. S475 - S476
To access, purchase, authenticate, or subscribe to the full-text of this article, please visit this link: http://dx.doi.org/10.1016/j.euroneuro.2016.09.557... 
PHARMACOLOGY & PHARMACY | PSYCHIATRY | NEUROSCIENCES | CLINICAL NEUROLOGY | Medical research | Analysis | Depression, Mental | Genomics | Genetic research | Medicine, Experimental | Reverse discrimination | Hälsovetenskaper | Medical and Health Sciences | Medicin och hälsovetenskap | Health Sciences
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4. Full Text Ethics, Law and Governance of Biobanking : National, European and International Approaches
by Mascalzoni, Deborah and Medicinska fakulteten and Medicinska och farmaceutiska vetenskapsområdet and Uppsala universitet and Institutionen för folkhälso- och vårdvetenskap and Centrum för forsknings- och bioetik
02/2015, 2015, The International Library of Ethics, Law and Technology, ISBN 9789401795722, Volume 14, 275
This book contains an overview of the existing regulatory landscape for biobank research in the Western world and some critical chapters to show how... 
Moral and ethical aspects | Law and legislation | Biological specimens | Biobanks | Ethics | Medicine & Public Health | Theory of Medicine/Bioethics | Civil Law | Medical and Health Sciences | Medicin och hälsovetenskap | Medicinsk etik | Hälsovetenskaper | Medical Ethics | Ethics law governance biobanking | Health Sciences
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5. Full Text The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks
by Staunton, Ciara and Slokenberga, Santa and Mascalzoni, Deborah
European journal of human genetics : EJHG, ISSN 1018-4813, 08/2019, Volume 27, Issue 8, pp. 1159 - 1167
The General Data Protection Regulation (GDPR) came into force in May 2018. The aspiration of providing for a high level of protection to individuals' personal... 
CONSENT | BIOCHEMISTRY & MOLECULAR BIOLOGY | GENETICS & HEREDITY | Ethics | General Data Protection Regulation | Policy | Health policy
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6. Full Text International Charter of principles for sharing bio-specimens and data
by Mascalzoni, Deborah and Dove, Edward S and Rubinstein, Yaffa and Dawkins, Hugh J.S and Kole, Anna and Mccormack, Pauline and Woods, Simon and Riess, Olaf and Schaefer, Franz and Lochmüller, Hanns and Knoppers, Bartha M and Hansson, Mats and Medicinska fakulteten and Medicinska och farmaceutiska vetenskapsområdet and Uppsala universitet and Institutionen för folkhälso- och vårdvetenskap and Centrum för forsknings- och bioetik
European Journal of Human Genetics, ISSN 1018-4813, 06/2015, Volume 23, Issue 6, pp. 721 - 728
There is a growing international agreement on the need to provide greater access to research data and bio-specimen collections to optimize their long-term... 
BROAD CONSENT | BIOBANKS | PRIVACY | BIOCHEMISTRY & MOLECULAR BIOLOGY | GENETICS & HEREDITY | ETHICS | Biomedical research | Data collections | Genomics | Bioethics | Patients | Charters | Ethics | Privacy | Researchers | Information sharing | Genetics | Agreements | Public health | Cancer | Hälsovetenskaper | Medical Ethics | Medical and Health Sciences | Medicin och hälsovetenskap | Medicinsk etik | Health Sciences
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7. Full Text From patients to partners: Participant-centric initiatives in biomedical research
by Kaye, Jane and Curren, Liam and Anderson, Nick and Edwards, Kelly and Fullerton, Stephanie M and Kanellopoulou, Nadja and Lund, David and MacArthur, Daniel G and Mascalzoni, Deborah and Shepherd, James and Taylor, Patrick L and Terry, Sharon F and Winter, Stefan F and Medicinska fakulteten and Medicinska och farmaceutiska vetenskapsområdet and Uppsala universitet and Institutionen för folkhälso- och vårdvetenskap and Centrum för forsknings- och bioetik
Nature Reviews Genetics, ISSN 1471-0056, 05/2012, Volume 13, Issue 5, pp. 371 - 376
Advances in computing technology and bioinformatics mean that medical research is increasingly characterized by large international consortia of researchers... 
CLINICAL INFORMATION | GENETICS & HEREDITY | Privacy | Informed Consent - ethics | Biomedical Research - ethics | Computational Biology - ethics | Humans | Social Media - ethics | Medical research | Laws, regulations and rules | Medicine, Experimental | Influence | Forecasts and trends | Management | Informed consent (Medical law) | Social aspects | Medical ethics | Medical informatics | Hälsovetenskaper | Medical Ethics | Medical and Health Sciences | Medicin och hälsovetenskap | Medicinsk etik | Health Sciences
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8. Full Text Improving the informed consent process in international collaborative rare disease research: Effective consent for effective research
by Gainotti, Sabina and Turner, Cathy and Woods, Simon and Kole, Anna and McCormack, Pauline and Lochmüller, Hanns and Riess, Olaf and Straub, Volker and Posada, Manuel and Taruscio, Domenica and Mascalzoni, Deborah and Medicinska fakulteten and Medicinska och farmaceutiska vetenskapsområdet and Uppsala universitet and Institutionen för folkhälso- och vårdvetenskap and Centrum för forsknings- och bioetik
European Journal of Human Genetics, ISSN 1018-4813, 08/2016, Volume 24, Issue 9, pp. 1248 - 1254
The increased international sharing of data in research consortia and the introduction of new technologies for sequencing challenge the informed consent (IC)... 
BROAD CONSENT | SOLIDARITY | CHALLENGE | OPT-IN | PRIVACY | BIOCHEMISTRY & MOLECULAR BIOLOGY | GENETICS & HEREDITY | SCIENCE | BIOBANKS | GENETIC RESEARCH | SOCIETY | ETHICS | Rare Diseases - genetics | European Union | Genetics, Medical - standards | Humans | Genetic Diseases, Inborn - genetics | Databases, Nucleic Acid - standards | Genetics, Medical - organization & administration | Informed Consent - standards | International Cooperation | Genetics, Medical - legislation & jurisprudence | Information Dissemination | Data collections | Genomics | Licenses | Consortia | Ethics | Privacy | Researchers | Collaboration | Information sharing | Genetics | Informed consent | Research centers | Public health | Hälsovetenskaper | Medical Ethics | Medical and Health Sciences | Medicin och hälsovetenskap | Medicinsk etik | Health Sciences
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9. Full Text Informed consent in the genomics era
by Mascalzoni, Deborah and Hicks, Andrew and Pramstaller, Peter and Wjst, Matthias and Medicinska fakulteten and Medicinska och farmaceutiska vetenskapsområdet and Uppsala universitet and Institutionen för folkhälso- och vårdvetenskap and Centrum för forsknings- och bioetik
PLoS Medicine, ISSN 1549-1277, 09/2008, Volume 5, Issue 9, pp. 1302 - 1305
Matthias Wjst and colleagues argue that traditional informed consent may no longer be appropriate when dealing with long-term studies using biological material. 
MEDICINE, GENERAL & INTERNAL | Clinical Trials as Topic - legislation & jurisprudence | Databases, Genetic | Informed Consent - standards | Clinical Trials as Topic - ethics | Data Collection | Research Subjects | Genomics - methods | Genomics - ethics | Informed Consent | Ethics | Public Health and Epidemiology | Research Methods | Genetics and Genomics | Patients | Research Design | Science Policy | Hälsovetenskaper | Medical Ethics | Medical and Health Sciences | Medicin och hälsovetenskap | Medicinsk etik | Health Sciences | Studies | Medical research | Informed consent | Decision making | Genomics
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10. Full Text 'You should at least ask'. the expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research
by McCormack, Pauline and Kole, Anna and Gainotti, Sabina and Mascalzoni, Deborah and Molster, Caron and Lochmüller, Hanns and Woods, Simon and Medicinska fakulteten and Medicinska och farmaceutiska vetenskapsområdet and Uppsala universitet and Institutionen för folkhälso- och vårdvetenskap and Centrum för forsknings- och bioetik
European Journal of Human Genetics, ISSN 1018-4813, 10/2016, Volume 24, Issue 10, pp. 1403 - 1408
Within the myriad articles about participants' opinions of genomics research, the views of a distinct group - people with a rare disease (RD) - are unknown. It... 
Information Dissemination - ethics | Genome-Wide Association Study - ethics | Rare Diseases - psychology | European Union | United States | Humans | Knowledge of Results (Psychology) | Genome-Wide Association Study - standards | Health Knowledge, Attitudes, Practice | Databases, Factual | Qualitative research | Young adults | Genomics | Patients | Consortia | Researchers | Consent | Collaboration | Information sharing | Genetic research | Children | Research centers | Bioinformatics | Bioethics | Teknik och teknologier | Bioteknisk etik | Environmental Biotechnology | Engineering and Technology | Miljöbioteknik
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11. Full Text Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research
by Goisauf, Melanie and Martin, Gillian and Bentzen, Heidi Beate and Budin-Ljosne, Isabelle and Ursin, Lars and Durnova, Anna and Leitsalu, Liis and Smith, Katharine and Casati, Sara and Lavitrano, Marialuisa and Mascalzoni, Deborah and Boeckhout, Martin and Mayrhofer, Michaela Th
PLoS ONE, ISSN 1932-6203, 09/2019, Volume 14, Issue 9, p. e0221496
Biobanks have evolved, and their governance procedures have undergone important transformations. Our paper examines this issue by focusing on the perspective... 
Surveys | Technology application | Usage | Databases | Genetic research | Planning | Public-private sector cooperation | Medical research | Biomedical research | Genomics | Attitudes | Partnerships | Data processing | Medicine | Ethics | Researchers | Consent | Informed consent | Transformations | Public health | Communication
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12. Full Text Are requirements to deposit data in research repositories compatible with the european union's general data protection regulation?
by Mascalzoni, Deborah and Bentzen, Heidi Beate and Budin-Ljøsne, Isabelle and Bygrave, Lee Andrew and Bell, Jessica and Dove, Edward S and Fuchsberger, Christian and Hveem, Kristian and Mayrhofer, Michaela Th and Meraviglia, Viviana and O'Brien, David R and Pattaro, Cristian and Pramstaller, Peter P and Rakić, Vojin and Rossini, Alessandra and Shabani, Mahsa and Svantesson, Dan Jerker B and Tomasi, Marta and Ursin, Lars and Wjst, Matthias and Kaye, Jane
Annals of Internal Medicine, ISSN 0003-4819, 2019, Volume 170, Issue 5, pp. 332 - 334
To reproduce study findings and facilitate new discoveries, many funding bodies, publishers, and professional communities are encouraging--and increasingly... 
MEDICINE, GENERAL & INTERNAL | EU directives | Data collection | Scientific method | Regulation | Data integrity
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13. Full Text Dynamic Consent: A potential solution to some of the challenges of modern biomedical research
by Budin-Ljøsne, Isabelle and Teare, Harriet J. A and Kaye, Jane and Beck, Stephan and Bentzen, Heidi Beate and Caenazzo, Luciana and Collett, Clive and D'Abramo, Flavio and Felzmann, Heike and Finlay, Teresa and Javaid, Muhammad Kassim and Jones, Erica and Katić, Višnja and Simpson, Amy and Mascalzoni, Deborah and Medicinska fakulteten and Medicinska och farmaceutiska vetenskapsområdet and Uppsala universitet and Institutionen för folkhälso- och vårdvetenskap and Centrum för forsknings- och bioetik
BMC Medical Ethics, ISSN 1472-6939, 01/2017, Volume 18, Issue 1, p. 4
Background: Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly... 
Ethics | Dynamic consent | Biobank | Research communication | Clinical trials | Clinical research | Participant engagement | Software tools | BROAD CONSENT | RECRUITMENT | SOCIAL SCIENCES, BIOMEDICAL | MEDICAL ETHICS | PARTICIPANT-CENTRIC INITIATIVES | VIEWS | GENOMIC RESEARCH | INFORMED-CONSENT | ENGAGEMENT | EXPECTATIONS | PERCEPTIONS | Biomedical Research - ethics | Follow-Up Studies | Professional-Patient Relations | Humans | Data Collection - methods | Ethics, Research | Information Dissemination | Patient Selection | Informed Consent | Research Personnel | Biomedical Research - methods | Research Subjects | Research Design | Communication | Medicine, Experimental | Medical research | Forecasts and trends | Ethical aspects | Medical and Health Sciences | Medicin och hälsovetenskap | Medicinsk etik | Hälsovetenskaper | Medical Ethics | Health Sciences
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14. Full Text Meeting patients’ right to the correct diagnosis: Ongoing international initiatives on undiagnosed rare diseases and ethical and social issues
by Gainotti, Sabina and Mascalzoni, Deborah and Bros-Facer, Virginie and Petrini, Carlo and Floridia, Giovanna and Roos, Marco and Salvatore, Marco and Taruscio, Domenica and Medicinska fakulteten and Medicinska och farmaceutiska vetenskapsområdet and Uppsala universitet and Institutionen för folkhälso- och vårdvetenskap and Centrum för forsknings- och bioetik
International Journal of Environmental Research and Public Health, ISSN 1661-7827, 10/2018, Volume 15, Issue 10, p. 2072
The time required to reach a correct diagnosis is a key concern for rare disease (RD) patients. Diagnostic delay can be intolerably long, often described as an... 
Deep phenotyping | Genomic matchmaking | Undiagnosed rare diseases | Secondary findings | Diagnostic odyssey | Patient involvement | Next generation sequencing | genomic matchmaking | EXOME | WHOLE-GENOME | next generation sequencing | PRECISION MEDICINE | GENETIC-DISEASES | diagnostic odyssey | deep phenotyping | HUMAN PHENOTYPE ONTOLOGY | INSTITUTES-OF-HEALTH | INCIDENTAL FINDINGS | ENVIRONMENTAL SCIENCES | CLINICAL DIAGNOSTICS | PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH | undiagnosed rare diseases | patient involvement | secondary findings | PROGRAM | MATCHMAKING | Rare Diseases - genetics | Social Justice | Global Health | Humans | Rare Diseases - diagnosis | Genotype | International Cooperation | Patient Preference | Patient Rights - ethics | Delayed Diagnosis - ethics | Phenotype | Patient Participation - methods | Delayed Diagnosis - prevention & control | Databases, Factual | Review | Medical and Health Sciences | Medicin och hälsovetenskap | Hälsovetenskaper | Omvårdnad | Nursing | Health Sciences
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15. Full Text Collaboration to Understand Complex Diseases: Preeclampsia and Adverse Pregnancy Outcomes
by Roberts, James M and Mascalzoni, Deborah and Ness, Roberta B and Poston, Lucilla and Global Pregnancy Collaboration and Medicinska fakulteten and Medicinska och farmaceutiska vetenskapsområdet and Uppsala universitet and Institutionen för folkhälso- och vårdvetenskap and Centrum för forsknings- och bioetik
Hypertension, ISSN 0194-911X, 04/2016, Volume 67, Issue 4, pp. 681 - 687
BIOMARKERS | CARDIOVASCULAR-DISEASE | NULLIPAROUS WOMEN | RISK | PERIPHERAL VASCULAR DISEASE | PREDICTION | Hypertension, Pregnancy-Induced - therapy | Pregnancy Complications, Cardiovascular - therapy | Severity of Illness Index | Global Health | Risk Assessment | Humans | Cooperative Behavior | Hypertension, Pregnancy-Induced - diagnosis | Pregnancy | Interdisciplinary Communication | Female | Pregnancy Complications, Cardiovascular - diagnosis | Pre-Eclampsia - therapy | Pregnancy Outcome | Pre-Eclampsia - diagnosis | Hälsovetenskaper | Medical Ethics | Medical and Health Sciences | Medicin och hälsovetenskap | Medicinsk etik | Health Sciences
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16. The role of solidarity(-ies) in rare diseases research
by Mascalzoni, Deborah and Petrini, Carlo and Taruscio, Domenica and Gainotti, Sabina
Advances in Experimental Medicine and Biology, ISSN 0065-2598, 2017, Volume 1031, pp. 589 - 604
Solidarity plays a relevant role in rare diseases (RDs) research to create and enable research in the field. In Europe RDs are estimated to affect between 27... 
Biobanking | Patient associations | Data sharing | Reciprocity | Solidarity | Governance | International research | MEDICINE, RESEARCH & EXPERIMENTAL | ORPHAN DRUGS | DISORDERS | BIOBANKS | DISCOVERY | BIORESOURCES | PLATFORM | PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH | DUTY | WILL | HEALTH | ETHICS
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17. Full Text Rare diseases and now rare data?
by Mascalzoni, Deborah and Knoppers, Bartha Maria and Aymé, Ségolène and MacIlotti, Matteo and Dawkins, Hugh and Woods, Simon and Hansson, Mats G and Medicinska fakulteten and Medicinska och farmaceutiska vetenskapsområdet and Uppsala universitet and Institutionen för folkhälso- och vårdvetenskap and Centrum för forsknings- och bioetik
Nature Reviews Genetics, ISSN 1471-0056, 06/2013, Volume 14, Issue 6, pp. 372 - 372
GENOMICS | GENETICS & HEREDITY | Biomedical Research - legislation & jurisprudence | Rare Diseases | Confidentiality - legislation & jurisprudence | Information Dissemination - legislation & jurisprudence | Europe | Humans | Medical and Health Sciences | Medicin och hälsovetenskap
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18. Full Text Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen’s health through public-private initiatives
by Piciocchi, Cinzia and Ducato, Rossana and Martinelli, Lucia and Perra, Silvia and Tomasi, Marta and Zuddas, Carla and Mascalzoni, Deborah
Journal of Community Genetics, ISSN 1868-310X, 4/2018, Volume 9, Issue 2, pp. 177 - 190
This paper outlines some of the challenges faced by regulation of genetic biobanking, using case studies coming from the Italian legal system. The governance... 
Human Genetics | Gene Function | Public Health | Gene Therapy | Data protection | Gene patent | Epidemiology | Privacy | Biobanking | Biomedicine | Genetic data | Informed consent | General Data Protection Regulation | Bankruptcy | Italian law | Case studies | Ethics | Data processing | Genetic resources | Original
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19. Full Text International Charter of principles for sharing bio-specimens and data (vol 23, pg 721, 2015)
by Mascalzoni, D and Dove, ES and Rubinstein, Y and Dawkins, HJS and Kole, A and McCormack, P and Woods, S and Riess, O and Schaefer, F and Lochmuller, H and Knoppers, BM and Hansson, M
EUROPEAN JOURNAL OF HUMAN GENETICS, ISSN 1018-4813, 07/2016, Volume 24, Issue 7, pp. 1096 - 1096
BIOCHEMISTRY & MOLECULAR BIOLOGY | GENETICS & HEREDITY | Corrigendum
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20. Full Text Rare disease research: Breaking the privacy barrier
by Mascalzoni, Deborah and Paradiso, Angelo and Hansson, Matts
Applied & Translational Genomics, ISSN 2212-0661, 06/2014, Volume 3, Issue 2, pp. 23 - 29
Due to the few patients affected, rare disease research has to count on international registries to exist in order to produce significant research outputs.... 
Privacy | Private sphere | Informed consent | Research barriers
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