List of works by Sharon F. Terry

"Insufficient evidence" isn't sufficient anymore

scientific article published on 01 March 2011

21st-Century Healthcare Policy and the Regulation of Laboratory-Developed Tests

scientific article published in September 2015

A Crack in the Wall of Competition: Will Compassion Prevail?

scientific article published in November 2017

A New Day Dawns for Direct-to-Consumer Marketing.

scientific article published in May 2017

A Role for Storytelling in Improving Consumer Understanding of Genetic Testing

scientific article published on 28 December 2018

A call for participatory oversight

scientific article published on February 2014

A consumer perspective on forensic DNA banking

scientific article published in January 2006

A dynamic map for learning, communicating, navigating and improving therapeutic development

scientific article published on 22 December 2017

A measure of truth in genetic testing

scientific article published on 01 June 2009

A quick method for the quantitative analysis of mixtures. 1. Powder X-ray diffraction.

scientific article published in June 2008

A randomized controlled trial of oral phosphate binders in the treatment of pseudoxanthoma elasticum

scientific article

Accelerate medical breakthroughs by ending disease earmarks

scientific article published on 01 May 2010

Acquired pseudoxanthoma elasticum presenting after liver transplantation

scientific article

Adopt a moratorium on heritable genome editing

scientific article published on 01 March 2019

Advocacy groups as research organizations: the PXE International example

scientific article

An Evidence Framework for Genetic Testing

scientific article published on 01 July 2017

An end to the myth: there is no drug development pipeline

scientific article published on February 2013

Answering the hard questions: the Genetic Testing Registry and its request for information

scientific article published on 01 January 2011

Application of a Dynamic Map for Learning, Communicating, Navigating, and Improving Therapeutic Development

scientific article published on 22 December 2017

Are they really incidental after all?

Assay, Preclinical, and Clinical Brick Walls and Opportunities for System Change Through GRANDRx

scientific article published on 16 March 2010

Assay, preclinical, and clinical brick walls and opportunities for system change through GRANDRx

scientific article

Assessing NIH's big idea

scientific article published in July 2013

Banning Pens and Pads Misses the Main Point

journal article; published in The American Journal of Bioethics in 2003

Beast of Burden? Comments on the NIH Genetic Testing Registry

scientific article published on 01 March 2012

Benchmarking Essence of Care using electronic patient records

scientific article published on 01 October 2004

Benefits and Risks of Sharing Genomic Information

scientific article

Beyond Recommendation: Requiring Returning Findings to Research Participants

scientific article published on 01 March 2018

Beyond genetic tests and biomarkers: what about therapeutic misconception?

scientific article published in September 2012

Bipartisan Genetic Research Privacy Protection Act Introduced

scientific article published on June 2016

Carrier testing for spinal muscular atrophy

scientific article

Clinical trial result reporting: Time to move into the 21st century.

scientific article published on 29 August 2016

Collaboration: the foundation for success in rare disease genetic test development

article

Come together, right now!

scientific article published on 01 October 2011

Committee report: Considerations and recommendations for national guidance regarding the retention and use of residual dried blood spot specimens after newborn screening

scientific article published on 01 July 2011

Committee report: Method for evaluating conditions nominated for population-based screening of newborns and children

scientific article published on March 2010

Community engagement about genetic variation research

scientific article

Community-Centered Family Health History: A Customized Approach to Increased Health Communication and Awareness

article

Companion diagnostics: the next step in personalized clinical care

scientific article published in October 2012

Companions: tests and drug for better healthcare

scientific article published on 01 May 2014

Consumer perceptions of genetic testing

scientific article published on 01 June 2012

Copy number variation in the ATP-binding cassette transporter ABCC6 gene and ABCC6 pseudogenes in patients with pseudoxanthoma elasticum

scientific article published on 8 March 2015

Creating a data resource: what will it take to build a medical information commons?

scientific article published on 22 September 2017

Current trends in biobanking for rare diseases: a review [Corrigendum]

scientific article published in March 2015

Dangerous Liaisons: Connecting CRISPR/Cas9 to Clinical Science.

scientific article published in August 2015

Data Acquisition, Curation, and Use for a Continuously Learning Health System

scientific article

Data Sharing as the New Norm: What About the People Part?

scientific article

Database shares that transform research subjects into partners

scientific article published on 01 October 2019

Development of a rapid, reliable genetic test for pseudoxanthoma elasticum

scientific article published on February 2007

Direct-to-consumer marketing of genetic tests: access does not reflect clinical utility

scientific article published on 01 December 2010

Disease advocacy organizations catalyze translational research

scientific article

Don't just invite us to the table: authentic community engagement

article by Sharon F. Terry published June 2013 in Genetic Testing and Molecular Biomarkers

Down syndrome: national conference on patient registries, research databases, and biobanks

scientific article

Engaging research participants and building trust

article by Elizabeth J Horn et al published December 2011 in Genetic Testing and Molecular Biomarkers

Ensuring the safe use of genomic medicine in children

Epigenetics and Racial Health Inequities

scientific article published on September 2016

Ethical issues in identifying and recruiting participants for familial genetic research.

scientific article published in November 2004

Evidence for a founder effect for pseudoxanthoma elasticum in the Afrikaner population of South Africa

scientific article

Evidence synthesis and guideline development in genomic medicine: current status and future prospects

scientific article

Expanded Carrier Screening and Its Implications on Genetic Testing Protocols

scientific article published on 01 November 2016

Exploring priorities for public health genomics

scientific article published on 01 November 2011

Extracutaneous Ultrastructural Alterations in Pseudoxanthoma Elasticum

article

Extracutaneous ultrastructural alterations in pseudoxanthoma elasticum

scientific article

FDA and CLIA oversight of advanced diagnostics and biomarker tests

scientific article published in June 2010

FDA's framework for regulatory oversight of LDTs

scientific article published on 01 December 2014

Five principles: returning genetic testing results to research participants

Free at Last? Discussing the Future of Forensic Genealogy

scientific article published on 27 March 2020

Free the Data

scientific article

Free the data: the end of genetic data as trade secrets

scientific article

From base Pairs to bedside…and beyond

scientific article published on 01 November 2012

From bench to practice to population health impact: barriers to realizing the public health and clinical promise of basic scientific discovery

scientific article published on 01 April 2011

From patients to partners: participant-centric initiatives in biomedical research

scientific article

Future of Microbiomes Through the National Microbiome Initiative

scientific article

Future of Rare Diseases Research 2017-2027: an IRDiRC Perspective

scientific article

GINA and ADA: New Rule Seriously Dents Previous Protections

scientific article published on 23 June 2016

Genetic Alliance Registry and BioBank: a novel disease advocacy-driven research solution

scientific article published on 01 March 2011

Genetic Testing and the Workplace

scientific article published on 19 February 2016

Genetic information nondiscrimination act insurance protections issued

scientific article published on 01 December 2009

Genetic testing

scientific article published on 01 June 2008

Genetic testing and biomarkers in the new decade

scientific article published on 01 February 2010

Genetic testing and native peoples: the call for community-based participatory research

scientific article published on August 2014

Genetic testing registry launched

scientific article

Governance Through Privacy, Fairness, and Respect for Individuals

scientific article

Healthy choices through family history: a community approach to family history awareness

scientific article published on 5 August 2008

Hearing voices: FDA seeks advice from patients

scientific article published in November 2015

How disease advocacy organizations participate in clinical research: a survey of genetic organizations

scientific article published in February 2012

Human genetics. Before it's too late--addressing fear of genetic information

scientific article published in July 2002

Improved Diagnosis and Care for Rare Diseases through Implementation of Precision Public Health Framework

scientific article published in January 2017

Including all voices in international data-sharing governance.

scientific article published on 7 March 2018

Insights into Pathomechanisms and Treatment Development in Heritable Ectopic Mineralization Disorders: Summary of the PXE International Biennial Research Symposium-2016.

scientific article published on April 2017

International Rare Disease Research Consortium commits to aggressive goals.

scientific article published in July 2011

Iona college community centered family health history project: lessons learned from student focus groups

scientific article published on 10 August 2011

Is this a genesis in prenatal testing: genomic knowledge, risk or benefit?

scientific article published on 01 December 2012

Key Implications of Data Sharing in Pediatric Genomics

article by Vasiliki Rahimzadeh et al published 1 May 2018 in JAMA Pediatrics

Landscape analysis of registries and biobanks: a tool for disease advocacy organizations to enhance translational research systems

scientific article

Learning Genetics ⬇️

scientific article published on September 1, 2003

Let's Keep the Sharing Alive

scientific article published on 22 April 2020

Let's try it: me for you.

scientific article published on July 2013

Leveraging electronic health records for clinical research

article

Life as a numerator: Putting the person in personal genomics

scientific article published on February 2016

Linking personal health data to genomic research

scientific article

MSeqDR: Making genomics accessible to the mitochondrial disease community

scholarly article by Marni J. Falk et al published September 2015 in Mitochondrion

Magnesium supplementation in the treatment of pseudoxanthoma elasticum: A randomized trial

scientific article published on 28 February 2019

Making Personalized Health Care Even More Personalized: Insights From Activities of the IOM Genomics Roundtable

scientific article published in July 2015

Mammographic findings in pseudoxanthoma elasticum

scientific article published on 01 March 2003

Managing incidental findings and research results in genomic research involving biobanks and archived data sets

scientific article

Managing incidental findings in human subjects research: analysis and recommendations

scientific article published on January 2008

Mitochondrial Disease Sequence Data Resource (MSeqDR): a global grass-roots consortium to facilitate deposition, curation, annotation, and integrated analysis of genomic data for the mitochondrial disease clinical and research communities

scientific article (publication date: March 2015)

More Than Meets the Eye: Our Microbiome May Be Key to Decreasing Infection

scientific article published on 01 May 2019

Moving forward: putting genetic testing to use

scientific article

Mutation detection in the ABCC6 gene and genotype-phenotype analysis in a large international case series affected by pseudoxanthoma elasticum

scientific article

NIST RM 8398: Standardizing Discoveries

scientific article

New Institute of Medicine Report on Molecular Biomarkers.

scientific article published on 14 April 2016

Newborn Screening and Health Communications

scientific article published on 01 September 2018

No Seat at the Recommendations Table?

scientific article published in January 2018

Not just trials and tribulations-we need results!

scientific article

Not your grandfather's genetic testing oversight

scientific article published on 01 August 2010

Nothing about us without us: guidelines for genetic testing

scientific article published on 01 May 2013

Novel clinico-molecular insights in pseudoxanthoma elasticum provide an efficient molecular screening method and a comprehensive diagnostic flowchart

scientific article published in January 2008

Obama's Precision Medicine Initiative

scientific article

PSEUDOXANTHOMA ELASTICUM: DIAGNOSTIC FEATURES, CLASSIFICATION, AND TREATMENT OPTIONS.

scientific article published on June 2014

Participant-driven matchmaking in the genomic era.

scientific article published on 7 August 2015

Participating in next generation sequencing

scientific article

Participation by clinical geneticists in genetic advocacy groups ⬇️

scientific article published on May 15, 2003

Permission to share biospecimens

scientific article published on 01 May 2012

Plain-language medical vocabulary for precision diagnosis.

scientific article published in April 2018

Planning the Genome Institute's Future

scientific article published in Science

Point-counterpoint. Ethics and genomic incidental findings

scientific article published on 16 May 2013

Power to the people: participant ownership of clinical trial data

scientific article

Precision medicine: generating real-world evidence for companion diagnostics

scientific article published on 01 February 2012

Providers' knowledge of genetics: A survey of 5915 individuals and families with genetic conditions

scientific article published on 01 May 2007

Pseudoxanthoma elasticum-like phenotype with cutis laxa and multiple coagulation factor deficiency represents a separate genetic entity

scientific article

Pseudoxanthoma elasticum: Wide phenotypic variation in homozygotes and no signs in heterozygotes for the c.3775delT mutation in ABCC6.

scientific article published in December 2009

Pseudoxanthoma elasticum: genetic diagnostic markers

scientific article published on January 2008

Pseudoxanthoma elasticum: progress in diagnostics and research towards treatment : Summary of the 2010 PXE International Research Meeting.

scientific article published on 10 June 2011

Pseudoxanthoma elasticum: progress in research toward treatment: summary of the 2012 PXE international research meeting

scientific article published in June 2013

Rare conditions: where do primary care and genetic diseases intersect?

scientific article published on 01 November 2010

Re: yellowish papules on flexural areas in a child

scientific article published on 01 November 2003

Realizing Our Potential in Biobanking: Disease Advocacy Organizations Enliven Translational Research

scientific article published on 8 April 2016

Recommendations of the European society of human genetics on genetic testing for common disorders

scientific article published on 01 May 2011

Reforming biobank consent policy: a necessary move away from broad consent toward dynamic consent

scientific article published on December 2013

Registry of genetic tests: a critical stepping stone to improving the genetic testing system

scientific article

Regulating genetic tests: issues that guide policy decisions

scientific article published on 01 January 2012

Reply to: "Comment on 'Magnesium supplementation in the treatment of pseudoxanthoma elasticum: Is magnesium oxide the best choice?'"

scientific article published on 04 July 2019

Reporting actionable research results: shared secrets can save lives

scientific article

Research Progress in Pseudoxanthoma Elasticum and Related Ectopic Mineralization Disorders

scientific article

Research for the People by the People

scientific article published in September 2017

Response to the commentary "Significance of patient registries for dermatological disorder".

scientific article published on 13 December 2012

Reuniting Families Using Genetic Testing?

scientific article published on 01 August 2018

Review of 11 national policies for rare diseases in the context of key patient needs

scientific article published on 31 March 2017

Rising Concern Regarding Pregnant Women and Zika Virus

scientific article published on 14 July 2016

Risky business: the need for hypothesis-generating research

scientific article published on 01 September 2011

Screening criteria: the need to deal with new developments and ethical issues in newborn metabolic screening

scientific article published on 7 October 2012

Sharing clinical research data: perspectives on an IOM workshop

scientific article published on January 2013

Sharing your thoughts about sharing clinical trial data

scientific article

So What Does That Test Result Mean? Genetic Counselors in the Trenches

scientific article published on 19 July 2019

Spectrum of genetic variation at the ABCC6 locus in South Africans: Pseudoxanthoma elasticum patients and healthy individuals.

scientific article published on 31 March 2009

Standards for personalized medicine

scientific article published on 01 April 2010

Test now, share now

scientific article published on 01 February 2013

Testicular microlithiasis in association with pseudoxanthoma elasticum

scientific article

The Day the President of the United States Said "That Data is Mine".

scientific article published on 22 March 2016

The International Rare Diseases Research Consortium Announces New Vision and Goals

scientific article

The Matchmaker Exchange: a platform for rare disease gene discovery

scientific article

The Price of Precision: Genetic Testing and Drug Costs in America

scientific article published on 01 July 2018

The Role of Patient Advocacy During a Time of Surprise Billing

scientific article published on 30 September 2019

The Scientific Foundation for personal genomics: recommendations from a National Institutes of Health-Centers for Disease Control and Prevention multidisciplinary workshop

scientific article

The effects of bisphosphonates on ectopic soft tissue mineralization caused by mutations in the ABCC6 gene

scientific article

The genomic applications in practice and prevention network

scientific article published on July 2009

The global alliance for genomics & health

scientific article published on 01 June 2014

The haystack is made of needles

scientific article

The impact of false-positive newborn screening results on families: a qualitative study

scientific article

The need to build trust: a perspective on disparities in genetic testing

scientific article published on September 2013

The science, applications, and ethical concerns surrounding low copy number DNA analysis

scientific article published on 01 June 2015

The study is open: Participants are now recruiting investigators

scientific article published on 01 January 2017

Time for NIH to lead on data sharing

scientific article

To Pay or Not to Pay? Is that the Question?

scientific article published on 28 January 2016

To Test or Not to Test?

scientific article published on 01 October 2018

Toward clinical genomics in everyday medicine: perspectives and recommendations

scientific article published on 25 January 2016

Transparency, openness, and genetic testing

scientific article

Turning Toward Participants in Biobanking

scientific article published on 01 March 2017

Understanding gene-environment interactions

scientific article published on 01 June 2011

Warfarin accelerates ectopic mineralization in Abcc6(-/-) mice: clinical relevance to pseudoxanthoma elasticum

scientific article published on 15 February 2013

What are the biggest challenges and opportunities for biorepositories in the next three to five years?

scientific article published on 01 June 2010

What do leaders of disease-specific advocacy organizations know about pharmacogenomics and biomarkers, anyway?

scientific article published on 01 March 2009

Will the wall come tumbling down?

scientific article published on 01 May 2015

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