The Patient Registry: PATRAS
The PATient-based Registry for phenotyping and therapy evaluation in RASopathies (PATRAS) is at the heart of EURAS and recruitment is coordinated by partner Syngap Elternhilfe e. V..
Through this secure online platform, families can directly contribute to research by sharing information about daily life, medical history, and treatment experiences. Every registration helps scientists:
- Understand how RASopathies affect development and behaviour,
- Evaluate the effects of individual treatments, and
- Develop therapies tailored to individual needs.
PATRAS is more than a database. It is a community of families, clinicians, and researchers across more than 13 countries who are working together to advance care and discovery for rare neurodevelopmental conditions.
All data is handled confidentially and ethically, in full compliance with European data-protection standards. Participation is voluntary, and families can withdraw at any time.
Who can join?
PATRAS welcomes patients diagnosed with:
- Costello Syndrome (CS)
- Cardiofaciocutaneous Syndrome (CFC)
- SYNGAP1 Syndrome
- Noonan Syndrome
Parents, legal caregivers, or adult patients can register to become part of this collective effort.
Join the Network — Help Advance Research
Every story, every datapoint, every family matters. By joining PATRAS, families and patients help researchers connect the dots turning individual experiences into scientific breakthroughs.
Register, join PATRAS, and be part of the effort to bring new understanding and new breakthroughs to the RASopathy community.