Publications by authors named "Yaffa Rubinstein"

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Explore Biobanking Issues: Get to Know ISBER's Working Groups and Special Interest Groups.
Clare M Allocca, Lalita Wadhwa, Piper Mullins, Cheryl Michels, Yaffa Rubinstein

Biopreserv Biobank· December 2022

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The case for open science: rare diseases.
Yaffa R Rubinstein, Peter N Robinson, William A Gahl, Paul Avillach, Gareth Baynam, Tamar B Rubinstein

JAMIA Open· October 2020

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Recommendations for Improving the Quality of Rare Disease Registries.
Yllka Kodra, Jérôme Weinbach, Manuel Posada-de-la-Paz, Alessio Coi, S Lydie Lemonnier, Yaffa R Rubinstein

Int J Environ Res Public Health· August 2018

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Rare Disease Biospecimens and Patient Registries: Interoperability for Research Promotion, a European Example: EuroBioBank and SpainRDR-BioNER.
Yaffa R Rubinstein, Manuel Posada de la Paz, Marina Mora

Adv Exp Med Biol· June 2018

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Data Quality in Rare Diseases Registries.
Yllka Kodra, Manuel Posada de la Paz, Alessio Coi, Michele Santoro, Fabrizio Bianchi, Yaffa R Rubinstein

Adv Exp Med Biol· June 2018

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The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers.
Sabina Gainotti, Paola Torreri, Chiuhui Mary Wang, Robert Reihs, Heimo Mueller, Yaffa Rubinstein

Eur J Hum Genet· May 2018

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Improving the value of clinical research through the use of Common Data Elements.
Jerry Sheehan, Steven Hirschfeld, Erin Foster, Udi Ghitza, Kerry Goetz, Yaffa Rubinstein

Clin Trials· December 2016

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The risk of re-identification versus the need to identify individuals in rare disease research.
Mats G Hansson, Hanns Lochmüller, Olaf Riess, Franz Schaefer, Michael Orth, Yaffa Rubinstein

Eur J Hum Genet· November 2016

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International Charter of principles for sharing bio-specimens and data.
Deborah Mascalzoni, Edward S Dove, Yaffa Rubinstein, Hugh Js Dawkins, Anna Kole

Eur J Hum Genet· July 2016

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International Charter of principles for sharing bio-specimens and data.
Deborah Mascalzoni, Edward S Dove, Yaffa Rubinstein, Hugh J S Dawkins, Anna Kole

Eur J Hum Genet· June 2015

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NIH/NCATS/GRDR® Common Data Elements: A leading force for standardized data collection.
Yaffa R Rubinstein, Pamela McInnes

Contemp Clin Trials· May 2015

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Role of international registries in enhancing the care of familial hypercholesterolaemia.
Emma Hammond, Gerald F Watts, Yaffa Rubinstein, Waleed Farid, Michael Livingston

Int J Evid Based Healthc· June 2013

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Down syndrome: national conference on patient registries, research databases, and biobanks.
Mary Lou Oster-Granite, Melissa A Parisi, Leonard Abbeduto, Dorit S Berlin, Cathy Bodine, Yaffa Rubinstein

Mol Genet Metab· January 2012

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Informed consent and patient registry for the rare disease community: Editorial.
Christine Grady, Yaffa R Rubinstein, Stephen C Groft

Contemp Clin Trials· January 2012

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Informed consent process for patient participation in rare disease registries linked to biorepositories.
Yaffa R Rubinstein, Stephen C Groft, Sara Hull Chandros, Julie Kaneshiro, Barbara Karp

Contemp Clin Trials· January 2012

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Biospecimen reporting for improved study quality (BRISQ).
Helen M Moore, Andrea B Kelly, Scott D Jewell, Lisa M McShane, Douglas P Clark, Yaffa Rubinstein

J Proteome Res· August 2011

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Biospecimen reporting for improved study quality (BRISQ).
Helen M Moore, Andrea B Kelly, Scott D Jewell, Lisa M McShane, Douglas P Clark, Yaffa Rubinstein

Cancer Cytopathol· April 2011

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Biospecimen Reporting for Improved Study Quality.
Helen M Moore, Andrea Kelly, Scott D Jewell, Lisa M McShane, Douglas P Clark, Yaffa Rubinstein

Biopreserv Biobank· April 2011

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The case for a global rare-diseases registry.
Christopher B Forrest, Ronald J Bartek, Yaffa Rubinstein, Stephen C Groft

Lancet· March 2011

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Driving interest in consolidating resources for the creation of a global rare disease patient registry.
Yaffa R Rubinstein, Stephen C Groft

Contemp Clin Trials· September 2010

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Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB).
Yaffa R Rubinstein, Stephen C Groft, Ronald Bartek, Kyle Brown, Ronald A Christensen

Contemp Clin Trials· September 2010

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Chromosomal protein HMGN1 modulates the expression of N-cadherin.
Yaffa R Rubinstein, Takashi Furusawa, Jae-Hwan Lim, Yuri V Postnikov, Katherine L West

FEBS J· November 2005

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Chromosomal protein HMGN1 enhances the acetylation of lysine 14 in histone H3.
Jae-Hwan Lim, Katherine L West, Yaffa Rubinstein, Michael Bergel, Yuri V Postnikov

EMBO J· September 2005

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