Social media methods for studying rare diseases (Q33551760)

28 July 2017

Social media methods for studying rare diseases (English)

1 reference

28 July 2017

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1 reference

Brian J Zikmund-Fisher

object named as

Brian J Zikmund-Fisher

7

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author name string

Kurt R Schumacher

1

1 reference

28 July 2017

Kathleen A Stringer

2

1 reference

28 July 2017

Janet E Donohue

3

1 reference

28 July 2017

Sunkyung Yu

4

1 reference

28 July 2017

Ashley Shaver

5

1 reference

28 July 2017

Regine L Caruthers

6

1 reference

28 July 2017

Carlen Fifer

8

1 reference

28 July 2017

Caren Goldberg

9

1 reference

28 July 2017

Mark W Russell

10

1 reference

28 July 2017

language of work or name

English

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publication date

14 April 2014

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28 July 2017

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28 July 2017

133

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28 July 2017

5

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28 July 2017

e1345-53

1 reference

Pharmacotherapy challenges of Fontan-associated plastic bronchitis: a rare pediatric disease.

28 July 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

The internet user profile of Italian families of patients with rare diseases: a web survey.

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

Evaluation of an online platform for multiple sclerosis research: patient description, validation of severity scale, and exploration of BMI effects on disease course

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

Using information technology and social networking for recruitment of research participants: experience from an exploratory study of pediatric Klinefelter syndrome

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

Demographic characteristics and estimated prevalence of Fontan-associated plastic bronchitis

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

Spontaneous coronary artery dissection: a disease-specific, social networking community-initiated study

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

Disparities in use of a personal health record in a managed care organization.

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

Contemporary outcomes after the Fontan procedure: a Pediatric Heart Network multicenter study

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

Protein-losing enteropathy after Fontan operation

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

Access to medical records for research purposes: varying perceptions across research ethics boards

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

Protein-losing enteropathy after the Fontan operation: an international multicenter study. PLE study group

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

The HIPAA conundrum in the era of mobile health and communications

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

The apomediated world: regulating research when social media has changed research

31 October 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

Recruiting young adults to child maltreatment research through Facebook: a feasibility study.

31 October 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

Development of an internet-based cohort of patients with inflammatory bowel diseases (CCFA Partners): methodology and initial results

31 October 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4006435

Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification rules under the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act; other modifications to the HIPAA

31 October 2018

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/24733869

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Identifiers

DOI

10.1542/PEDS.2013-2966

1 reference

28 July 2017

1 reference

28 July 2017

1 reference