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Research posters
Characterizing the diagnostic journey of patients with GM1 gangliosidosis using real-world data
November 2022
Characterizing the diagnostic journey of patients with GM2 gangliosidosis using real-world data
November 2022
Treatment Patterns for Depression and Anxiety Among Patients with Progressive Supranuclear Palsy (PSP)
August 2022
Characterizing rare disease healthcare utilization using a real-world data platform
May 2022
A Real-World Data Approach to Advance Research in Myasthenia Gravis
May 2022
The JUMP (Journey to Understand MMA and PA) Study: A Natural History Study
May 2022
Patterns of medication use in patients with rare Mendelian pediatric epilepsies
April 2022
The JUMP (Journey to Understand MMA and PA) Study: A Natural History Study
April 2022
Distance to expert care for patients with lysosomal storage disorders enrolled in a real-world data research platform
February 2022
Genetic Testing Patterns in SLC6A1-related Disorders
December 2021
Flexible while familiar: a practical application of a non-exceptionalist approach to social media recruitment in rare disease research
November 2021
Engaging rare disease patients and caregivers in research through a two-sided technology platform
October 2021
Epidemiology and access to research for participants in a rare disease real-world data research platform
October 2021
Early symptomatic onset of patients with PDCD10-related cerebral cavernous malformations
September 2021
Investigating IBM and VCP Patient Characteristics in Rural and Urban areas using the AllStripes Research Real-World Data Platform
June 2021
Developing a framework for performing genotype-phenotype analyses using a real-world data platform
November 2020
Scaling a real-world evidence platform for lysosomal storage diseases
November 2020
Development of a robust real-world data platform for rare diseases
September 2020
Development of a real-world evidence platform in NF2 to examine treatment patterns and outcomes
June 2020
Identifying gaps in access to research in patients with rare diseases using a real-world data platform
May 2020
Development of a real-world evidence platform for MPS Type III (Sanfilippo Syndrome)
February 2020
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