NBIAready: Online Collection of Natural History Patient-reported Outcome Measures
Condition(s):Neurodegeneration With Brain Iron Accumulation (NBIA)Last Updated:October 8, 2020Recruiting
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Condition(s):Neurodegeneration With Brain Iron Accumulation (NBIA)Last Updated:October 8, 2020Recruiting
Condition(s):Neurodegeneration With Brain Iron Accumulation (NBIA); Pantothenate Kinase-associated Neurodegeneration (PKAN); Beta-Propeller Protein-Associated Neurodegeneration (BPAN); Mitochondrial Membrane Protein Associated Neurodegeneration (MPAN); Fatty Acid Hydroxylase-associated Neurodegeneration (FAHN); Kufor Rakeb Syndrome; Neuroferritinopathy; Aceruloplasminemia; Woodhouse Sakati Syndrome; COASY Protein-associated Neurodegeneration (CoPAN); PLA2G6-Associated Neurodegeneration (PLAN)Last Updated:December 21, 2023Recruiting
Condition(s):MLD; Krabbe Disease; ALD; MPS I; MPS II; MPS III; Vanishing White Matter Disease; GM3 Gangliosidosis; PKAN; Tay-Sachs Disease; NP Deficiency; Osteopetrosis; Alpha-Mannosidosis; Sandhoff Disease; Niemann-Pick Diseases; MPS IV; Gaucher Disease; GAN; GM1 Gangliosidoses; Morquio Disease; S-Adenosylhomocysteine Hydrolase Deficiency; Batten Disease; Pelizaeus-Merzbacher Disease; Leukodystrophy; Lysosomal Storage Diseases; Purine Nucleoside Phosphorylase Deficiency; Multiple Sulfatase Deficiency DiseaseLast Updated:November 4, 2021Recruiting
Condition(s):Intellectual Disability; Rubinstein-Taybi Syndrome; Cystic Fibrosis; Congenital Heart Defect; Periventricular Nodular Heterotopia; Neurodegeneration With Brain Iron Accumulation (NBIA); AlbinismLast Updated:February 21, 2024Recruiting
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