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Why should I get genetic testing?
(English)
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Author(s): NORD, NPKUA
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PDF
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PKU-SSIS - Adolescent
(English)
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Author(s): Clinical Outcomes Solutions (COS)
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Description: The PKU-SSIS will help researchers understand the patient experience with PKU. To help develop the questionnaire, we would ask adolescents with PKU and their parents/guardians to participate in two online surveys.
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Flyer
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Fichier canadien sur les éléments nutritifs (FCÉN) - Recherche par aliment
(English)
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Author(s): Gouvernement du Canada
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Description: Vous pouvez effectuer une recherche d'aliments avec ou sans accents, en lettres majuscules ou minuscules et avec des mots clés complets ou partiels. Les mots clés seront recherchés peu importe leur ordre, partout dans la description. Un espace laissé entre les mots sera interprété comme l'opérateur « et ». Vous pouvez aussi utiliser les opérateur « ou » et « non » pour préciser la recherche. Les mots clés sont cherchés en tant que mots complets ou mots partiels, ce qui veut dire qu'une recherche au singulier trouvera les mots au pluriel. Exemples : a) pomme trouvera aussi pommes, pommette, b) pomme crue (ou pomme et crue) trouvera aussi tous les aliments qui contiennent ces deux mots dont pomme de terre crue, c) pomme ou crue trouvera les aliments qui contiennent l'un ou l'autre de ces mots ainsi que les deux mots présents dans le nom. Pomme non crue trouvera tous les aliments qui contiennent le mot pomme sauf ceux renfermant le mot crue.
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Link
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Your Nutritional Monitoring for metabolic diseases - Tyrophed
(English)
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Author(s): https://tyrophed.com/#
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Description: This application is an initiative of Mrs. Lydia St-Gelais, mother of little Édouard suffering from tyrosinemia. The application was named in honor of little Édouard (ED) and aims to help parents of children or patients with metabolic diseases like Édouard. This application is specially designed to track tyrosinemia, phenylketonuria, maple syrup urine disease and urea cycle disease. This tool will facilitate the daily monitoring of nutritional intake and leave you more time for what really matters!
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Link
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Effects of oral sepiapterin on blood Phe concentration in a broad range of patients with phenylketonuria (APHENITY): results of an international, phase 3, randomised, double-blind, placebo-controlled trial
(English)
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Author(s): Muntau, Ani; Longo, Nicola; Ezgu, Fatih, Schwartz, Ida Vanessa D; Lah, Melissa; Bratkovic, Drago, Smith, Neil; MacDonald, Anita; Kiykim, Ertugrul; Zori, Roberto; Campistol Plana, Jaume; Bélanger-Quintana, Amaya; Lund, Allan; Guilder, Laura;
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Description: https://pubmed.ncbi.nlm.nih.gov/39368841/
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PDF
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Link
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Canadian Nutrient File (CNF) - Search by food
(English)
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Author(s): Government of Canada
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Description: The food search is case- and accent-insensitive, and keywords used can represent complete or partial words. Keywords will be matched in any order against any part of food descriptions. If more than one keyword is used, they may be separated by a space or any of the operators 'and', 'or', or 'not'. A space is equivalent to the operator 'and'. In all cases, keywords are searched both as whole words and partial words, which means that a singular keyword will also find the corresponding plural forms, and prefixed forms. Examples: a) 'fish' will also find 'Crayfish', b) 'apple raw' (or 'apple and raw') will find all the foods having both keywords anywhere in their description, but also: 'Pineapple, raw', c) 'apple or raw' will find any food having either or both keywords anywhere in the description, while 'apple not raw' will find all instances of 'apple' except where 'raw' is also present anywhere in the description.
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Link
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Patient PKU Pediatric Registry in Canada
(English)
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Author(s): CanPKU+
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Oral Health and Rare Disorders
(English)
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Author(s): CanPKU+; Chute, Tanya
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PKU Registry
(English)
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Author(s): Inform Rare; CanPKU+
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Le Registre Canadien de la PCU
(English)
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Author(s): Inform Rare; CanPKU+
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Rating:
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