Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching...
Transcript of Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching...
![Page 1: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/1.jpg)
Searching databases for
rare disease information
David OZIELEURORDIS
www.eurordis.org
EURORDIS Online Training
![Page 2: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/2.jpg)
Part 1Characteristics of databases
![Page 3: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/3.jpg)
3
Database definition
Collection of information,
concerning a defined domain,
organized ,
described with precise and specific keywords ( indexed)
![Page 4: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/4.jpg)
4
Organisation and indexation of a databaseOrphanet
Fabry disease
Alpha-galactosidase A deficiency
Research programs
Clinical trials
Drugs
Clinics
Diagnosis
Texts on diseases
Persons
Anderson-Fabry diseaseLocation
Angiokeratoma, diffuse
![Page 5: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/5.jpg)
5
Organisation and indexation of a databasePubmed
Prophylaxis in bleeding disorders.
Oldenburg J.Thromb Res. 2011 Jan;127
Abstract
Author(s)
Location(s)
Journal
Editor
Title
Keywords (topics)
disease,…
Subheadings
Diagnosis, treatment,…Primary prophylaxis with coagulation factor concentrates has become the standard of care for children with hemophilia to reduce the risk of bleeding and related morbidity…
Date
![Page 6: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/6.jpg)
6
Google Databases
1,000 billion pages collected
Selected resources
Full text Keywords + Full text
Variable quality Validated information
FreeAds
Fees
Various types / kinds
![Page 7: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/7.jpg)
7
Bibliographic databases
Topics
Journal, Date, Title,
Authors
![Page 8: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/8.jpg)
8
Directory (factual) databases
![Page 9: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/9.jpg)
9
Numeric databases
![Page 10: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/10.jpg)
10
Full text databases
![Page 11: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/11.jpg)
11
Part 2Rare disease databases
![Page 12: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/12.jpg)
12
Major resources
• Orphanet
• NORD Rare disease database
• Genetics Home Reference
• Gene Reviews
• OMIM
• Medscape Reference
![Page 13: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/13.jpg)
13
Orphanet
• Portal
• 6,000 diseases
• 6 languages
• Directory of services
• Online encyclopaedia
![Page 14: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/14.jpg)
14
![Page 15: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/15.jpg)
15
Major resources
• Orphanet
• NORD Rare disease database
• Genetics Home Reference
• Gene Reviews
• OMIM
• Medscape Reference
Major resources
![Page 16: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/16.jpg)
16
Major resources
• Orphanet
• NORD Rare disease database
• Genetics Home Reference
• Gene Reviews
• OMIM
• Medscape Reference
Major resources
![Page 17: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/17.jpg)
17
Part 3Orphan drug information
![Page 18: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/18.jpg)
18
Designation and Marketing authorization
• Orphan drugs� Prevalence < 1 / 2,000 people
• Designation� Criteria
• EMA (European Medicines Agency)� COMP (Committee for Orphan Medical Products)
• Marketing authorization� Central authorization procedure
• U.S., Australia, Japan,…
![Page 19: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/19.jpg)
19
Orphan drugs
• List of orphan drugs
� European Medicines Agency (EMA)
� Orphanet
• Orphan drug databases
� Eudrapharm
� Orphanet
![Page 20: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/20.jpg)
20
Orphan drugs
• List of orphan drugs
� European Medicines Agency (EMA)
� Orphanet
• Orphan drug databases
� Eudrapharm
� Orphanet
Orphan drugs
![Page 21: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/21.jpg)
21
• Eudrapharm (EMA)� Drugs with marketing authorization� Europe� Centralized procedure� 1995
� Summary of Product Characteristics– European languages
– characteristics as agreed during the assessment pro cess– for health professionals – available for general public.
![Page 22: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/22.jpg)
22
• Orphanet� Orphan designation in Europe� Marketing authorization
– Europe– United States– Japan, Australia,...
![Page 23: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/23.jpg)
23
Part 4Clinical trial databases
![Page 24: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/24.jpg)
24
Clinical trials
• Research study
� New drug, new indication
� Medical device
• Safety
• Efficacy
![Page 25: Searching databases rare disease informationimg2.eurordis.org/infohub/DBaseNew.pdf · Searching databases for rare disease information David OZIEL EURORDIS EURORDIS Online Training.](https://reader035.fdocuments.in/reader035/viewer/2022070907/5f7ae8ce8d09900eef444e72/html5/thumbnails/25.jpg)
25