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Standardization of Questions in Rare Disease Registries: The PRISM Library Project

Standardization of Questions in Rare Disease Registries: The PRISM Library Project

Generic content relative to many or all patient registries was also incorporated, including standard elements from the Rare Diseases Clinical Research Network (RDCRN) Contact Registry (supporting over 200 rare diseases) [19], the OMB and NIH demographics [20

Rachel Lynn Richesson, Denise Shereff, James Everett Andrews

Interact J Med Res 2012;1(2):e10


Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians

Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians

To ensure a broad and balanced representation of patients suffering from rare diseases, eleven groups of rare diseases were formed when this study commenced; this was believed to represent considerable variety in rare diseases.

Ana Babac, Svenja Litzkendorf, Katharina Schmidt, Frédéric Pauer, Kathrin Damm, Martin Frank, Johann-Matthias Graf von der Schulenburg

Interact J Med Res 2017;6(2):e23


A European Network of Email and Telephone Help Lines Providing Information and Support on Rare Diseases: Results From a 1-Month Activity Survey

A European Network of Email and Telephone Help Lines Providing Information and Support on Rare Diseases: Results From a 1-Month Activity Survey

Rare diseases are defined as diseases affecting less than 1 in 2000 individuals in Europe or less than 200,000 people in the United States [1,2]. It is estimated that between 5000 and 8000 distinct rare diseases exist [3].

Francois Houyez, Rosa Sanchez de Vega, Tuy Nga Brignol, Monica Mazzucato, Agata Polizzi

Interact J Med Res 2014;3(2):e9


Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents’ Web Information Needs

Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents’ Web Information Needs

The Internet is recognized as a significant source of health information [1] and may assist parents of children with rare conditions (rare conditions includes rare diseases and rare disorders in this paper) to find information, clarify, and understand the information

Honor Nicholl, Catherine Tracey, Thelma Begley, Carole King, Aileen M Lynch

J Med Internet Res 2017;19(2):e51