What are the benefits of joining the DTDS + RARE-X Data Collection Program?

RESOURCES

May 6

The DTDS + RARE-X Data Collection Program (DCP) is designed to empower families while advancing research. By participating, you are helping build a stronger understanding of DTDS—while maintaining control over your own data.

Here are some key benefits of joining:

1. It’s Free for Families

There is no cost to participate in the Data Collection Program, making it accessible to families around the world.

2. Participate from Home

Patients, parents, and caregivers can complete surveys from the comfort of their own homes, on their own schedule.

This flexibility makes it easier to contribute, even with the demands of daily caregiving.

3. Support Future Clinical Trials

The data collected through the DCP can help serve as a natural history dataset, which may reduce the need for placebo groups in future clinical trials.

This increases the likelihood that eligible DTDS patients can receive active treatment during studies—an important consideration for rare disease families.

For more on how natural history data supports research, organizations like National Institutes of Health provide helpful overviews of clinical research and study design.

4. Advance Global Research

The program allows qualified researchers around the world—who are vetted by RARE-X—to access de-identified, aggregated data.

This broader access helps researchers identify patterns, better understand symptoms, and accelerate discoveries that may not be possible with smaller, isolated datasets.

5. You Stay in Control of Your Data

Patients and families maintain ownership of their data. You choose:

What information to share
Which surveys to complete
Your privacy settings

You can leave the program at any time.

Importantly, completed survey data can also be downloaded and shared directly with your child’s healthcare providers to support more informed care decisions.

To learn more about patient rights and data privacy in research, Global Genes offers patient-friendly guidance on participating in rare disease studies.

Final Thought

Participating in the Data Collection Program is a meaningful way to contribute to the future of DTDS research—while also gaining tools to better understand and manage your child’s care today.

Every data point helps move the community one step closer to better treatments and, ultimately, a cure.

Want to know more or get started? Click here!

Learn more about RARE-X by clicking here.

Christie Browning

Christie is a five-time HSPA award-winning writer with a long resume of creative, compelling writing. Her background includes journalism and marketing, which allows her to bring a specialized voice to the pieces created for her clients. On her own, Christie has written for newspapers, online magazines and major publications. For her clients, Christie produces web designs, press and media releases, blog articles, downloadable worksheets and flyers as well as social media content. Her long-time career as an entrepreneur gives her unique insight into what her clients need to promote their products, services and messages.

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