Connect patients with clinical development
What we commit to
When we perform in-house clinical trials at Sobi, we will continue to ensure that our protocols are patient-centred, patient views are heard and communication around trials is provided in a transparent and patient-friendly way.
In phases of clinical research not directly or fully owned by Sobi, we commit to putting our efforts into making information available and driving connections to foster inclusion of patients in existing clinical research.
What we have done so far
Sobi recognises that early engagement of the patient voice is vital. It ensures well-designed clinical studies and minimises study burden.By actively involving patient experts, Sobi paves the way for future medicines that truly meet patient needs. Sobi engages patient experts during the study design phase. Patient experts provide valuable input on the clinical design, with a specific emphasis on patient-relevant (patient related) outcomes. Their insights help shape the study protocols and end points. Sobi’s Clinical Patient Councils play a pivotal role in shaping clinical research and development. These Clinical Patient Councils bring together Patient Organisations worldwide, along with cross-functional Sobi teams. Together, they collaboratively plan, execute and close disease awareness activities and clinical studies. Patient councils provide insight into lived experience while Sobi retains full responsibility for scientific and regulatory decisions.
Some examples:
- Easier Syringes and Packaging: Sobi developed syringes and packaging that are user-friendly for people living with Rare Diseases.
- Tailored Formulations: Sobi created medicine formulations better suited for both paediatric and adult patients. This customisation is aimed at enhancing patient experience and adherence.
- Burden Assessment: Patients are also consulted on the practical aspects of participating in a study. Sobi considers whether the study requirements are too burdensome for patients and adjusts protocols accordingly.
- Educational Support: Sobi supports people living with Rare Diseases and their families during the clinical study experience.
Up to 2025
27%
of the studies incorporated patient input
Measurement
We will measure impact through:
- Number of % New Protocols with patient input heard
- Number of of cocreated Lay Summaries
Involvement
The Sobi departments involved are:
- Clinical Development
- Patient Engagement
- Compliance
- Legal (depending on project)