نتائج البحث

Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations

• Authors : Sandra Courbier; Rebecca Dimond; Virginie Bros-Facer

Subjects: Rare diseases, quantitative survey; Data sharing; Data protection

• Source: Orphanet Journal of Rare Diseases, Vol 14, Iss 1, Pp 1-15 (2019)

تفاصيل العنوان

RaDiCo, the French national research program on rare disease cohorts.

• Authors : Amselem, Serge^1,2 (AUTHOR); Gueguen, Sonia¹ (AUTHOR); Weinbach, Jérôme³ (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 10/29/2021, Vol. 16 Issue 1, p1-12. 12p.

تفاصيل العنوان

Share and protect our health data: an evidence based approach to rare disease patients' perspectives on data sharing and data protection - quantitative survey and recommendations.

• Authors : Courbier S; EURORDIS-Rare Diseases Europe, Paris, France. .; Dimond R

Subjects: Computer Security* ; Rare Diseases*; Information Dissemination/Information Dissemination/Information Dissemination/*methods

• Source: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2019 Jul 12; Vol. 14 (1), pp. 175. Date of Electronic Publication: 2019 Jul 12.Publisher: BioMed Central Country of Publication: England NLM ID: 101266602 Publication Model: Electronic Cited Medium: Internet ISSN: 1750-1172

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European lipodystrophy registry: background and structure.

• Authors : von Schnurbein, Julia; Adams, Claire; Akinci, Baris

Subjects: CLINICAL trial registries; LIPODYSTROPHY; BACK up systems

• Source: Orphanet Journal of Rare Diseases; 1/15/2020, Vol. 15 Issue 1, p1-11, 11p

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Analysis of Incentive Policies and Initiatives on Orphan Drug Development in China: Challenges, Reforms and Implications.

• Authors : Zhao, Zhiyao^1,2 (AUTHOR); Pei, Zhongyang^3,4 (AUTHOR); Hu, Anxia^3,4 (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 7/27/2023, Vol. 18 Issue 1, p1-12. 12p.

تفاصيل العنوان

Can the cross-borders directive improve the quality of genetic testing in the future?

• Authors : Jean-Jacques Cassiman

Subjects: Medicine(all); Quality management; business.industry

• Source: Orphanet Journal of Rare Diseases

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Telemedicine strategy of the European Reference Network ITHACA for the diagnosis and management of patients with rare developmental disorders.

• Authors : Smith, Michael¹ (AUTHOR); Alexander, Elizabeth¹ (AUTHOR); Marcinkute, Ruta^1,2 (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 4/25/2020, Vol. 15 Issue 1, p1-11. 11p.

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De-duplicating patient records from three independent data sources reveals the incidence of rare neuromuscular disorders in Germany.

• Authors : König, Kirsten^1,2 (AUTHOR) ; Pechmann, Astrid¹ (AUTHOR) ; Thiele, Simone³ (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 6/24/2019, Vol. 14 Issue 1, p1-7. 7p.

تفاصيل العنوان

Analysis of Incentive Policies and Initiatives on Orphan Drug Development in China: Challenges, Reforms and Implications

• Authors : Zhiyao Zhao; Zhongyang Pei; Anxia Hu

Subjects: Orphan drug development; Rare disease; Incentive policy

• Source: Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-12 (2023)

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RaDiCo, the French national research program on rare disease cohorts

• Authors : Serge Amselem; Sonia Gueguen; Jérôme Weinbach

Subjects: Rare diseases; e-Cohorts; Mutualized platform

• Source: Orphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-12 (2021)

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