The NIH Office of Rare Diseases Research patient registry Standard: a report from the University of New Mexico's Oculopharyngeal Muscular Dystrophy Patient Registry (Q37508856)

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English	The NIH Office of Rare Diseases Research patient registry Standard: a report from the University of New Mexico's Oculopharyngeal Muscular Dystrophy Patient Registry	scientific article

Statements

scholarly article

1 reference

Europe PubMed Central

PMC publication ID

20 August 2017

The NIH Office of Rare Diseases Research patient registry Standard: a report from the University of New Mexico's Oculopharyngeal Muscular Dystrophy Patient Registry (English)

1 reference

Europe PubMed Central

PMC publication ID

20 August 2017

1 reference

based on heuristic

inferred from title

1 reference

based on heuristic

inferred from title

oculopharyngeal muscular dystrophy

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based on heuristic

inferred from title

author name string

Shamsi Daneshvari

1

1 reference

Europe PubMed Central

PMC publication ID

20 August 2017

Sarah Youssof

2

1 reference

Europe PubMed Central

PMC publication ID

20 August 2017

Philip J Kroth

3

1 reference

Europe PubMed Central

PMC publication ID

20 August 2017

publication date

16 November 2013

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Europe PubMed Central

PMC publication ID

20 August 2017

AMIA Annual Symposium proceedings

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Europe PubMed Central

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20 August 2017

2013

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Europe PubMed Central

PMC publication ID

20 August 2017

269-277

1 reference

Europe PubMed Central

PMC publication ID

20 August 2017

Overview of the Surveillance, Epidemiology, and End Results database: evolution, data variables, and quality assurance.

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3900177

23 August 2017

The Rare Diseases Clinical Research Network Contact Registry update: features and functionality

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3900177

23 August 2017

Data Standards in Diabetes Patient Registries

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3900177

23 August 2017

Data standards for clinical research data collection forms: current status and challenges

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3900177

23 August 2017

RD PRISM Library: Patient Registry Item Specifications and Metadata for Rare Diseases

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3900177

23 August 2017

Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB)

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3900177

23 August 2017

Clinical research for rare disease: opportunities, challenges, and solutions

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3900177

23 August 2017

Endoscopic detection of dysplasia in patients with Barrett's esophagus using light-scattering spectroscopy

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3900177

23 August 2017

Clinical features of oculopharyngeal muscular dystrophy among Bukhara Jews

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3900177

26 June 2018

157th ENMC International Workshop: patient registries for rare, inherited muscular disorders 25-27 January 2008 Naarden, The Netherlands

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3900177

2 September 2018

A gift from nature: the birth of the statins

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3900177

2 September 2018

Oculopharyngeal muscular dystrophy with limb girdle weakness as major complaint

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3900177

2 September 2018

The SWAL-QOL and SWAL-CARE outcomes tool for oropharyngeal dysphagia in adults: III. Documentation of reliability and validity.

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3900177

2 September 2018

Registries for robust evidence

1 reference

https://pubmed.ncbi.nlm.nih.gov/24551336

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Oculopharyngeal muscular dystrophy in Hispanic New Mexicans

1 reference

https://pubmed.ncbi.nlm.nih.gov/24551336

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Recent studies on oculopharyngeal muscular dystrophy in Québec

1 reference

https://pubmed.ncbi.nlm.nih.gov/24551336

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Oculopharyngeal muscular dystrophy. A familial disease of late life characterized by dysphagia and progressive ptosis of the evelids

1 reference

https://pubmed.ncbi.nlm.nih.gov/24551336

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Identifiers

PMC publication ID

1 reference

Europe PubMed Central

PMC publication ID

20 August 2017

PubMed publication ID

1 reference

Europe PubMed Central

PMC publication ID

20 August 2017

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