Data Collection Program
Dopamine Transporter Deficiency Syndrome (DTDS) patients, families, and communities are now able to participate in data collection to expand and improve medical research. By partnering with RARE-X, you can begin the first step in making your patient information available to researchers. By generating the most comprehensive DTDS Data Collection Program, research can be accelerated and the development of new drugs, devices, or other therapies can happen. Our combined stories, experiences, and journeys hold the key to unlock future discoveries.
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. Click the button below to begin your enrollment.
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
How it works:
No clinic visits required, and there is no cost to you
Patients and Caregivers retain full control over who has access to patients’ health information
With your consent, clinicians (doctors), researchers, and drug development companies (biopharma) can access de-identified data to aid research
Enrolling into the Data Collection Program requires minimal time, and you can come back to the site at your convenience to update your information
The best web browsers to use for the Data Collection Program are Google Chrome, Apple Safari, or Mozilla Firefox. Do not use Microsoft Edge or Internet Explorer
Why Should You Participate?
The surveys you will take in the Data Collection Program are critical to the drug and treatment development process. Our goal is to make the process as easy as possible for you. The Data Collection Program uses a collaborative technology platform powered by RARE-X. RARE-X is a program of Global Genes created to accelerate rare disease research, treatments, and cures by removing barriers for data collection and sharing. By participating, you are…
Informing researchers how a disease or condition changes over time
Enabling better data to use in clinical trials
Reducing the time it takes to study new medicines in clinical trials
Speeding up the time to get therapeutics to patients
Enabling the use of data as a placebo (instead of actual patients) in a clinical trial
Learn more about RARE-X by clicking here.
Help Advance DTDS Research: Donate a Sample
We’re proud to partner with the U.S. National Institute of General Medical Sciences (NIGMS) to support research into Dopamine Transporter Deficiency Syndrome (DTDS). Through this partnership, we’re helping to collect anonymized DNA and skin samples from individuals with DTDS and their family members—from anywhere in the world.
These samples are stored at the NIGMS Human Genetic Cell Repository at the Coriell Institute, a trusted biobank that makes cell lines and DNA available to scientists researching genetic diseases like DTDS.
Note: Coriell does not perform research directly, nor do they provide individual genetic results. Instead, they supply the biological materials scientists need to push research forward.
Why Your Sample Matters
By contributing a sample, you are playing a critical role in the advancement of DTDS research. Scientists use these samples to better understand how DTDS works—and how it might be treated in the future.
Once accepted into the NIGMS Repository, you can even designate a researcher to receive a free vial of the cell culture.
Who Can Donate?
The NIGMS Repository currently accepts samples from:
Individuals diagnosed with DTDS
Biological parents of individuals with DTDS
Siblings of individuals with DTDS
While both blood and skin samples are accepted, scientists have indicated that skin samples are especially valuable at this time.
What’s Involved
Donating is a one-time process that includes:
A skin or blood sample
Signed consent and submission forms
A brief clinical data summary
Copies of relevant medical records (genetic testing results, physician letters, etc.)
All required forms are available on the NIGMS Donor Portal and will also be included in the sample collection kit. Forms are barcoded to match the sample tubes, ensuring accurate tracking and privacy.
How to Submit a Sample
Here’s a simple step-by-step guide to get started:
Register online to request a sample kit from the Coriell Institute.
You’ll receive an email with instructions and next steps.
Contact your doctor—pediatrician, neurologist, geneticist, or dermatologist—to schedule a skin biopsy.
Schedule your appointment on a Monday through Thursday (not near a public holiday).
Once your appointment is confirmed, order your skin biopsy kit from Coriell.
Complete the paperwork included with the kit—your doctor can help.
After the biopsy, send the sample and paperwork back to Coriell on the same day.
Let Coriell know the kit has been shipped—they’ll confirm once it’s received.
Questions?
If you or your doctor have any questions, the Coriell team is ready to help. Together, we can help accelerate research into DTDS and bring hope to families around the world.
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