Data Collection Program

As scientists strive to better understand DTDS and develop effective therapies, patient data is a critical part of accelerating their important work. Participating in our data collection program is one of the most important things that families of a child with DTDS can do.

DTDS families are excited to participate in the data collection to expand and improve medical research. By coming to our RARE-X data collection site you can begin the first step in making your privatized patient information available to researchers. By generating the most comprehensive DTDS Data Collection Program, we can accelerate the research and development of new drugs, devices, and other therapies. Only you hold the key to unlock future discoveries. 

DTDS Foundation has partnered with RARE-X to build a Data Collection Program for the DTDS community. By increasing access to research-ready data, we hope to accelerate the discovery of ground-breaking treatments for DTDS.

As a family affected by Dopamine Transporter Deficiency Syndrome you are invited and encouraged to participate in the DTDS Data Collection Program supported by the DTDS Foundation.  

The data collection program will:

  • Inform researchers how DTDS changes over time
  • Enable better data to design and use in clinical trials
  • Provide patients the opportunity to participate in clinical trials
  • Reduce the time it takes to study new medicines
  • Speed up the time to get treatments to patients
  • Enable the use of data as a placebo (instead of actual patients) in a clinical trial

Advantages of Participating in RARE-X Surveys

  • There is no cost to participate
  • If eligible, you may have the chance to participate in clinical trials
  • Reach more researchers worldwide – more eyes on data
  • Ability to connect with other patient organizations that present similarly to ours
  • Ability to update a change in symptoms at any time
  • Ability to manage who uses your data
  • Speeds up research and drug development

Learn more about the DTDS + RARE-X Data Collection Program by viewing the launch webinar.

About RARE-X

RARE-X is a program of Global Genes, created by leaders in the fields of patient advocacy, medical research, biopharma, and technology. RARE-X’s mission is to serve patients, and drive research towards therapeutic development.

  • RARE-X is leveraging existing technology powered by the Broad Institute of MIT and Harvard, which will support:
    • patients in data collection, structuring and responsible sharing,
    • clinicians in accelerating diagnosis and improving and tracking health outcomes,
    • researchers and biopharma with the data they need to identify, develop and track the impact of breakthrough treatments and cures.
  • Since RARE-X is a nonprofit, there is no cost to you or to the DTDS Foundation.

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