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A patient disease-based registry collects and maintains data on individuals diagnosed with a specific disease or condition. It focuses on understanding disease progression, variations in clinical presentation, and outcomes. These registries help support research, improve clinical care, and inform public health strategies.

Participating in patient disease-based registries allows individuals to contribute to a deeper understanding of their condition, directly impacting research and treatment advancements. By sharing their medical history, symptoms, and treatment outcomes, patients help researchers identify trends, improve diagnostic methods, and develop more effective therapies.

Click the Registries for your condition to see what is available

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Documents - 11. Rare Registries
Results:  8 Documents
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Why should I get genetic testing? (English)
Author(s): NORD, NPKUA Rating: No Rating   Read Reviews  
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PKU Registry (English)
Author(s): Inform Rare; CanPKU+ Rating: No Rating   Read Reviews  
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Le Registre Canadien de la PCU (English)
Author(s): Inform Rare; CanPKU+ Rating: No Rating   Read Reviews  
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Patient Partners and Parent Advisory Group Update (English)
Author(s): Inform Rare Rating: No Rating   Read Reviews  
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CO-DEVELOPING LONGITUDINAL PATIENT REGISTRIES FOR PHENYLKETONURIA AND MUCOPOLYSACCHARIDOSES IN CANADA (English)
Author(s): Adams, John,; Angel,Kim; Mitchell, John; Chakraborty, Pranesh; Potter, Beth; Inbar-Feigenberg, Michal; Stockler, Sylvia; Lamoureux, Monica; Howie, Alison; Pace, Alex; Butcher, Nancy; Rockman-Greenberg, Cheryl; Hayeems, Robin; Laberge, Anne-Marie et al Rating: No Rating   Read Reviews  
Description: Thierry Lacaze-Masmonteil, Jeff Round, Martin Offringa, Maryam Oskoui, Andreas Schulze, Kathy Speechley, Kednapa Thavorn, Yannis Trakadis, Kumanan Wilson
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Parent Advisory Group Recruitment (English)
Author(s): Inform Rare Rating: No Rating   Read Reviews  
Description: Recruitment form - Oct 2023 Now closed
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Ethical and practical considerations related to data sharing when collecting patient reported outcomes in care based child health research (English)
Author(s): Vanderhout,Shelley ;Potter,Beth ;Smith, Maureen; Butcher, Nancy;Vaters, Jordan; Chakraborty, Pranesh; Adams, John; Inbar?Feigenberg, Michal; Ofringa, Martin; Speechley, Kathy; Trakadis, Yannis; Binik, Ariella Rating: No Rating   Read Reviews  
Description: Purpose The collection and use of patient reported outcomes (PROs) in care-based child health research raises challenging ethical and logistical questions. This paper ofers an analysis of two questions related to PROs in child health research: (1) Is it ethically obligatory, desirable or preferable to share PRO data collected for research with children, families, and health care providers? And if so, (2) What are the characteristics of a model best suited to guide the collection, monitoring, and sharing of these data?
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Designing patient-oriented longitudinal disease registries for children with rare metabolic diseases in Canada (English)
Author(s): Wyatt A; Adams j; Angel K; Lamoureux; Howie A; Saad A; Butcher NJ; Greenberg C; Hayeems RZ; Inbar-Feigenberg M; Laberge AM; Lacaze-Masmonteil T; McCabe C; Mitchell JJ; Offringa M; Oskoui, Ruth ; Speechley,K; Stockler S , T Rating: No Rating   Read Reviews  
Description: Wyatt A, Adams J, Angel K, Lamoureux M, Howie A, Saad A, Butcher NJ, Greenberg C, Hayeems RZ, Inbar-Feigenberg M, Laberge AM, Lacaze-Masmonteil T, McCabe C, Mitchell JJ, Offringa M, Oskoui M, Ruth C, Speechley K, Stockler S, Thavorn K, Schulze A Trakadis Y Wilson K, Chakraborty P, Potter BK, & on behalf of the INFORM RARE Network
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