
|Articles|November 15, 2021
Emmes and MedGenome Launch Genomics Strategic Rare Disease Research Partnership
Advertisement
Emmes, a global, full-service Clinical Research Organization dedicated to supporting the advancement of public health and biopharmaceutical innovation, announced a partnership with MedGenome powered by human genomics, for rare disease patients.
The two companies will collaborate to combine patients' epidemiologic, phenotypic, and genomic data into custom disease registries aiming to enhance study design, support patient recruitment, and create standard control arms for advanced statistical models of treatment effect.
Some of the initial rare diseases that the Emmes/MedGenome partnership will address include hemophilia, Duchenne muscular dystrophy and muscular atrophies, and retinitis pigmentosa.
Advertisement
Related to this article

Neuroscience trials struggle to show benefit because symptoms are subjective and variable, and eCOA strengthens dossiers by standardizing ClinRO administration, capturing outcomes in real time to reduce recall bias, and adding patient and caregiver perspectives that clinician scales miss.

Community participation gaps look less like a question of patient willingness and more like a financing and infrastructure problem that no single bill has yet solved.

In today’s ACT Brief, we examine what changes when AI is embedded across clinical operations, why faster trial data isn’t yet producing faster decisions, and how FDA granted accelerated approval to a therapy for a rare airway disease.

Data capture is no longer the bottleneck, and whether the lag between a signal and a decision shrinks depends on signal design, AI governance, and vendor orchestration.

In this Q&A, Rajneesh Patil, global head of AI, digital, and innovation in clinical development at Syneos Health, discusses what changes when AI is embedded across protocol strategy, data infrastructure, and workflow tools at once, where governance frameworks tend to fall short, and why CROs must orchestrate AI ecosystems rather than simply aggregate them.

In today’s ACT Brief, we examine what policy changes would help community and rural institutions join research, how Walmart is expanding clinical trial centers into three more states, and how FDA approved Ilumya for adults with active psoriatic arthritis.

The planned sites in Livonia, Las Vegas, and San Antonio would expand a partnership that places clinical research and health screenings inside Walmart stores.
Advertisement
Advertisement
Trending on Applied Clinical Trials Online
1
From Signal to Action: Why Faster Trial Data Isn’t Producing Faster Decisions
2
Embedding AI Across the Clinical Operating Model: Q&A with Rajneesh Patil, Syneos Health
3
Walmart and Care Access Plan Three More Clinical Trial Centers in Michigan, Nevada, and Texas
4
ACT Brief: Embedding AI Across Operations, Faster Trial Decisions, and Voceryq Approval
5


