Research posters

Characterizing the diagnostic journey of patients with GM1 gangliosidosis using real-world data

Characterizing the diagnostic journey of patients with GM2 gangliosidosis using real-world data

Treatment Patterns for Depression and Anxiety Among Patients with Progressive Supranuclear Palsy (PSP)

Characterizing rare disease healthcare utilization using a real-world data platform

A Real-World Data Approach to Advance Research in Myasthenia Gravis

The JUMP (Journey to Understand MMA and PA) Study: A Natural History Study

Patterns of medication use in patients with rare Mendelian pediatric epilepsies

The JUMP (Journey to Understand MMA and PA) Study: A Natural History Study

Distance to expert care for patients with lysosomal storage disorders enrolled in a real-world data research platform

Genetic Testing Patterns in SLC6A1-related Disorders

Flexible while familiar: a practical application of a non-exceptionalist approach to social media recruitment in rare disease research

Engaging rare disease patients and caregivers in research through a two-sided technology platform

Epidemiology and access to research for participants in a rare disease real-world data research platform

Early symptomatic onset of patients with PDCD10-related cerebral cavernous malformations

Investigating IBM and VCP Patient Characteristics in Rural and Urban areas using the AllStripes Research Real-World Data Platform

Developing a framework for performing genotype-phenotype analyses using a real-world data platform

Scaling a real-world evidence platform for lysosomal storage diseases

Development of a robust real-world data platform for rare diseases

Development of a real-world evidence platform in NF2 to examine treatment patterns and outcomes

Identifying gaps in access to research in patients with rare diseases using a real-world data platform

Development of a real-world evidence platform for MPS Type III (Sanfilippo Syndrome)