Recruiting and retaining patients in rare disease and genomic medicine research requires more than outreach. Many participants need support understanding genetic risk, the purpose of research, and the practical burden of trial participation.
Patient education and structured communication improve engagement, retention, and willingness to participate in future studies.
This article presents patient engagement metrics from six studies conducted through the Sano platform. The results highlight patterns in participant experience that can inform recruitment and education strategies for rare disease and precision medicine research.
Patient engagement in clinical trials can be measured using several indicators:
These indicators reflect how well research programs support patients throughout the study experience. They can also serve as early indicators of enrollment efficiency, participant retention, and overall study performance.
Participants who completed the general flow on the Sano platform were invited to provide feedback about their experience. The results include responses from participants across six studies.
Patients who understand study instructions are more likely to complete onboarding steps and remain engaged throughout research participation.
Participants were asked how clear the platform instructions and messages were during their experience.
Survey results (n = 33):
Overall, 85% of participants rated platform instructions as clear or very clear.
Clear instructions reduce confusion during study onboarding and improve completion of required research activities.
This is particularly important for rare disease and genetic medicine studies where participation often includes multiple steps such as consent, surveys, and sample collection.
For research teams, this highlights the importance of investing in clear onboarding flows and communication design to reduce friction early in the participant journey.
Patients frequently have questions about eligibility, study expectations, and the implications of genetic research. Access to responsive support improves participant confidence and satisfaction.
Participants were asked how satisfied they were with the answers they received to questions or concerns.
Survey results (n = 33):
Overall, 72.8% of participants reported being satisfied or very satisfied with the support they received.
Timely responses help participants understand the study process and reduce uncertainty about participation.
In practice, responsive participant support helps build trust and can prevent uncertainty from turning into participant drop-off.
Many participants enter rare disease or genomics studies with limited access to reliable information about their condition. Educational resources can improve understanding of disease mechanisms, genetic testing, and research goals.
Participants were asked whether their understanding of their condition improved after signing up.
Survey results (n = 33):
Nearly three quarters of participants reported improved understanding of their condition.
Patient education supports informed participation and helps patients understand how research contributes to future treatment development.
For sponsors, this means educational resources should be designed with intention, helping participants understand both their condition and how research participation contributes to future therapies.
Participant experience influences whether patients remain active during the study and consider joining future research.
Participants rated their satisfaction with the program or study they joined.
Survey results (n = 36):
This reveals that 58.4% of participants reported being satisfied or very satisfied with their study participation.
Participants also rated their overall experience with Sano.
Survey results (n = 32):
87.5% of participants reported a positive overall experience.
Because participant experience influences long-term engagement, measuring satisfaction can provide an early signal of retention risk.
Sustained engagement is an important indicator of trust between patients and research programs.
Participants were asked whether they would be interested in future engagement opportunities.
Survey results (n = 21):
Nearly 60% of participants expressed interest in future research participation.
For research programs, willingness to re-engage reflects the level of trust built during participation and the strength of the overall patient experience.
Effective patient engagement also depends on communication practices that patients find accessible and relevant.
Emails achieved a 73% open rate.
Industry benchmarks:
Plain language communication, structured formatting, and digestible content improve engagement with research updates and educational materials.
Open ended responses provide insight into why patients choose to engage with research.
Participants frequently expressed a desire to contribute to scientific progress and help future patients.
One participant said,
“Sano Genetics has been a fantastic partner that allows me to be aware and be part of studies that will help future generations.”
Participants also emphasized the value of information and knowledge.
“You have been a great partner in this journey of discovery for my family. Half of the battle is knowing.”
Patients often request ongoing updates about research progress and the impact of their participation.
The results across six studies highlight several practical strategies for improving patient engagement in clinical research.
Provide clear study instructions
Simple and accessible communication reduces friction during study onboarding.
Offer responsive participant support
Patients need timely answers about study procedures and expectations.
Invest in patient education
Educational resources improve understanding of disease and research goals.
Maintain transparent communication
Participants want updates and explanations about research progress.
Use plain language communication
Accessible writing improves engagement with study communications.
Rare disease and genetic medicine research depends on long term collaboration with patients. Engagement and education improve recruitment efficiency, retention, and data quality.
Results from these six studies show measurable improvements in patient understanding, satisfaction, and willingness to participate in future research.
These outcomes demonstrate how structured patient engagement strategies can support the success of rare disease and precision medicine studies.