Sano blog | patient engagement

patient recruitment rare disease patient engagement

Long-term follow-up in clinical trials is a compounding asset for rare disease programs

Rare disease trials demand years of investment to identify, genetically screen, enroll, and engage patients. When the study closes, that effort disperses. Commu...

precision medicine rare disease protocol design patient engagement

Split verdicts: What HOPE-3 exposes about rare disease evidence

On 29 July 29, 2026, the same clinical trial data produced opposite verdicts. The FDA's Cellular, Tissue, and Gene Therapies Advisory Committee voted 9-3 that a...

screen failure patient recruitment rare disease genetic testing patient engagement

Why precision medicine trials fail on the way from protocol to patient

Precision medicine clinical trials are designed by some of the most capable scientists in drug development. The biomarker hypotheses are well-reasoned, the endp...

precision medicine rare disease patient engagement

Who tells patients when a gene therapy program pauses?

When a gene therapy sponsor pauses a clinical program, the operational machinery responds within hours. The medical monitor convenes a safety review. Regulatory...

precision medicine patient recruitment rare disease genetic testing patient engagement

Operation Trailblazer and the clinical trial access gap

On June 23, 2026, the US Department of Health and Human Services launched Operation Trailblazer, a cross-agency initiative coordinated across the FDA, NCI, NCAT...

precision medicine patient recruitment genetic testing patient engagement

FDA gene therapy guidance exposes patient recruitment gap

On June 2, 2026, the FDA released draft guidance that could reshape how gene therapies reach patients. The document, "Leveraging Prior Knowledge in the Developm...

Patient engagement through the precision medicine lifecycle

precision medicine patient engagement

The long game: Precision trials shouldn’t start from zero every time

Precision medicine sponsors invest heavily to identify, educate, screen, consent, genotype, and support rare patients. In many programs, once a trial ends, that...

precision medicine data privacy patient engagement

Trust is the foundation of precision medicine

UK Biobank and similar resources have made an extraordinary contribution to biomedical research, enabling important advances across genomics, population health,...

patient recruitment patient engagement

The psychology of kit return: What drives completion?

Genetic testing has become a core component of patient identification and stratification in modern clinical trials, particularly in rare disease and precision m...

Patient engagement in rare disease trials

rare disease patient engagement

Patient engagement and education insights from rare disease trials

Recruiting and retaining patients in rare disease and genomic medicine research requires more than outreach. Many participants need support understanding geneti...

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