Rare Diseases on the Internet: An Assessment of the Quality of Online Information (Q42144084)

17 October 2017

Rare Diseases on the Internet: An Assessment of the Quality of Online Information (English)

1 reference

17 October 2017

1 reference

1

1 reference

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:28100442%20AND%20SRC:MED&resulttype=core&format=json

10 June 2020

Svenja Litzkendorf

2

1 reference

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:28100442%20AND%20SRC:MED&resulttype=core&format=json

10 June 2020

Jens Göbel

3

1 reference

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:28100442%20AND%20SRC:MED&resulttype=core&format=json

10 June 2020

Holger Storf

4

1 reference

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:28100442%20AND%20SRC:MED&resulttype=core&format=json

10 June 2020

Jan Zeidler

5

1 reference

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:28100442%20AND%20SRC:MED&resulttype=core&format=json

Johann-Matthias von der Schulenburg

10 June 2020

6

1 reference

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:28100442%20AND%20SRC:MED&resulttype=core&format=json

10 June 2020

author name string

Frédéric Pauer

1

1 reference

17 October 2017

Holger Storf

4

1 reference

17 October 2017

Jan Zeidler

5

1 reference

17 October 2017

18 January 2017

1 reference

Journal of Medical Internet Research

17 October 2017

1 reference

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:28100442%20AND%20SRC:MED&resulttype=core&format=json

10 June 2020

volume

19

1 reference

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:28100442%20AND%20SRC:MED&resulttype=core&format=json

10 June 2020

page(s)

e23

1 reference

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:28100442%20AND%20SRC:MED&resulttype=core&format=json

10 June 2020

issue

1

1 reference

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:28100442%20AND%20SRC:MED&resulttype=core&format=json

Comparison of different approaches applied in Analytic Hierarchy Process - an example of information needs of patients with rare diseases

10 June 2020

cites work

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

Adopting Quality Criteria for Websites Providing Medical Information About Rare Diseases

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

The McMaster Optimal Aging Portal: Usability Evaluation of a Unique Evidence-Based Health Information Website

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

Survey of healthcare experiences of Australian adults living with rare diseases

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

The medical experience of a patient with a rare disease and her family

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

The involvement of patient organisations in rare disease research: a mixed methods study in Australia.

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

Medical information on the internet: a tool for measuring consumer perception of quality aspects

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

The quality of health information on allergic rhinitis, rhinitis, and sinusitis available on the internet

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

Social media methods for studying rare diseases

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

Quality of patient health information on the Internet: reviewing a complex and evolving landscape

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

Using the internet to seek information about genetic and rare diseases: a case study comparing data from 2006 and 2011

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

An Ultra-rare Disease? Where Do We Go from Here?

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

Quality of online health information about oral contraceptives from Hebrew-language websites

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

The need for worldwide policy and action plans for rare diseases

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

What do evaluation instruments tell us about the quality of complementary medicine information on the internet?

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

Effectiveness of strategies for informing, educating, and involving patients

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

The role of an online community for people with a rare disease: content analysis of messages posted on a primary biliary cirrhosis mailinglist

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

Does online health information seeking act like a health behavior?: a test of the behavioral model.

29 May 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5288561

Rare is frequent and frequent is costly: rare diseases as a challenge for health care systems

17 August 2018

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/28100442

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Identifiers

DOI

10.2196/JMIR.7056

1 reference

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:28100442%20AND%20SRC:MED&resulttype=core&format=json

10 June 2020

1 reference

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:28100442%20AND%20SRC:MED&resulttype=core&format=json

10 June 2020

1 reference