You Can Help Shape Research, Care and Future Treatments
You may not feel ready to participate in research today. However, important WWOX studies are already underway. By participating now, you can help ensure that your family’s experience is represented as researchers work to build a clearer and more complete understanding of WWOX-related disorders.
Families can support WWOX research in two important ways: through the WWOX Patient Registry and Medical Record Study.
The Patient Registry collects information provided by families worldwide about diagnosis, symptoms and development of people living with WWOX-related disorders. We have partnered with Sanford Health, a research hospital system in the United States, to host our registry. Anyone with a WWOX-related condition is eligible to join, regardless of where they live.
Medical Record Study use information already contained in a person’s health records to help researchers understand how WWOX-related conditions develop and change over time. This study is currently available only to families living in the United States.
Together, this information helps researchers identify patterns, improve care and prepare for future clinical trials and treatments. Every family’s experience adds an important piece to our understanding of WWOX-related conditions.
Which Option Applies to My Family?
US families may be eligible to participate in both programs.
Two Ways Families Can Participate
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Participation is voluntary. Each program has its own consent and privacy process.
Why Participation Matters
Important WWOX studies are already underway. By participating now, you can help ensure that your family’s experience is represented as researchers work to build a clearer and more complete understanding of WWOX-related disorders.
Understand the Condition
Your information helps build a clearer picture of WWOX-related disorders and outcomes.
Accelerate Research
More data leads to faster discoveries and new treatment opportunities.
Strengthen Community
Connect with a global network working together towards better futures.
Support Future Treatments
Your participation today can help shape the treatments of tomorrow.
How the WWOX Registry Works
1. Register
Create an account and provide basic information to get started.
2. Receive Secure Email
You will receive a secure email with a link to confirm your online account..
3. Complete Confidential Form
Provide information about diagnosis and current clinical status in a secure form.
4. Contribute Data to Research
Your de-identified data is stored securely and used to advance research.
5. Support Future Treatments
Your participation helps drive greater understanding and new treatment development.