ICTRP and Orphanet will work to identify and flag all rare disease related clinical trials in the ICTRP database for its users. The collaboration between ICTRP and Orphanet, which started in 2018, is aimed at making clinical trials on rare diseases easily identifiable and findable, thus improving knowledge on rare diseases. The Orphanet Rare Disease ontology (ORDO) is jointly developed by Orphanet and the EBI to provide a structured vocabulary for rare diseases capturing relationships between diseases, genes and other relevant features which will form a useful resource for the computational analysis of rare diseases. ICTRP and Orphanet will work to identify and flag all rare disease related clinical trials in the ICTRP database for its users. ©

The Orphanet report on disease registries provides a complete list of the 600 rare diseases … NORD does not promote or endorse participation in any specific organization. Orphanet is a European initiative that aims to improve the management and treatment of rare diseases. Description The ORPHANET is a database dedicated to providing information on rare diseases and orphan drugs. Its access is free of charge.

Orphanet missions Improve the visibility of rare diseases in the field of care and research through the developm ent of the specific and comprehensive nomenclature on rare diseases (ORPHA codes), Identify and provide high quality in formation on RD accessible to anyone: ensuring equal access to knowledge and expertise for all the stakeholders, and orient ating them in the mass of NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.Information on Clinical Trials and Research Studies Rare disease related clinical trials are identified using the Orphanet nomenclature of rare diseases.This will contribute to raising awareness of rare diseases and facilitating access to the most recent information on clinical trials in the field of rare diseases. Orphanet provides an inventory of rare diseases and related information for over 6000 of these diseases, as well as a directory of expert resources in the countries of the consortium. resources in every European legislative text on rare diseases and as key measures in many national plans/strategies for rare diseases. Clinical trials for rare diseases are exported into the Orphanet database, where additional information is available, in particular the rare disease concerned, the category of clinical trial, and the medicinal product in development, amongst other information.
Last update: 25/10/12 The European Commission is therefore advocating for the creation of a European Platform on Rare Diseases Registration that would act as the focal point for rare diseases registries in the EU. NORD is a registered 501(c)(3) charity organization. The WHO International Clinical Trials Registry Platform aims to offer a complete view of clinical research, which is accessible to all those involved in health care decision making. As stated in the European Commission’s Communication, “Rare Diseases: Europe’s Challenges”2, one key element for improving diagnosis and care in the field of …

Every effort is made to ensure that the details for each entry are as current as possible.The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. Any other electronic reproduction or other printed versions is strictly prohibited.NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.Copyright ©2020 NORD - National Organization for Rare Disorders, Inc. All rights reserved. Therefore, it is crucial to also include and highlight rare diseases. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Please note that NORD provides this information for the benefit of the rare disease community.