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Exciting News: The Phelan-McDermid Syndrome DataHub is Now Available in Spanish!

At the Phelan-McDermid Syndrome Foundation, we are committed to making resources accessible to all families in our community. That’s why we’re excited to announce that the Phelan-McDermid Syndrome DataHub is now available in Spanish!

What is the PMS DataHub?

The DataHub is a powerful tool for families and researchers alike. It allows families to:

  • Contribute data to support research, helping scientists, pharmaceutical companies, and clinicians uncover critical insights into Phelan-McDermid syndrome.
  • Organize medical information in one secure place for personal reference.
  • View summarized, de-identified data to compare experiences with others and make informed decisions about care.

The DataHub collects and organizes genetic reports, general health information, medication details, and other important data. It represents a significant improvement over the previous PMS International Registry, offering shorter, standardized surveys that are easier for families to complete and researchers to analyze.

How to Access the Spanish Version of the PMS DataHub

Switching to Spanish is simple:

  1. Visit the DataHub website.
  2. Look for the language icon at the top of the page.
  3. Click “English” and select “Spanish” from the dropdown menu.

Now you’re ready to navigate the DataHub in Spanish!

What’s Available in Spanish?

Both the Consent Form and the General Health Survey are available in Spanish, with additional translations planned for the future.

Why is This Important?

Making the PMS DataHub available in Spanish ensures that more families can participate, bringing a broader range of experiences and data to researchers. This inclusivity strengthens our mission to understand Phelan-McDermid syndrome and improve care for everyone in the community.

Ready to Get Started?

We invite all Spanish-speaking families to learn more about the DataHub or enroll today. 

Click here to access the PMS DataHub

Note: The DataHub website can be translated into any of the listed languages. However, the Consent Form and General Health Survey are currently available only in English and Spanish. Other languages will be added in the future.

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