NOW ENROLLING · IRB-APPROVED
ZTTK Research Connect
The first ZTTK-specific, IRB-approved, foundation-run research initiative, designed to connect your data, answer community-driven research questions, and accelerate discoveries for ZTTK syndrome.
Join Now- No new account needed
- U.S. & international families
- 100% voluntary
Why now
Your SON-Shine's contributions, finally connected.
Many of our SON-Shines have already contributed to research through electronic medical records, caregiver-reported outcomes, biosample collections, and natural history studies. Until now, there has been no simple way to connect these valuable contributions. ZTTK Research Connect changes that!
Electronic medical records
Caregiver-reported outcomes
Biosample collections
Unravel Drug Response Group
All linked securely through your Clinical Research ID (CRID) so your identifying information (name, date of birth, etc.) is protected
What makes Research Connect different
FOCUS ON ZTTK
Designed specifically for ZTTK and run by our foundation to collect data that matters most.
LINKING ACROSS PLATFORMS
We safely connect your records across platforms using your CRID to maximize the impact of your data.
FASTER COMMUNITY-DRIVEN RESEARCH
We can respond quickly to new questions and prioritize the studies important to our community.
YOU'RE IN CONTROL
Participation is voluntary. We will always explain what's being asked and why.
Who can participate / How to participate
- Individuals of any age with a clinical or genetic diagnosis of ZTTK syndrome.
- Parents, legal guardians, or legally authorized representatives on behalf of individuals with ZTTK syndrome.
Open to both U.S. and international families. Participation is quick and requires no new account.
Get your CRID
If you don't already have one, create a Clinical Research ID (CRID) to securely connect data across research studies at https://thecrid.org/login.php
Complete the consent form
It only takes a few minutes: my.studytrax.com/ui/a/zttk_consent/survey
Choose how you'd like to contribute
Pick any of the participation options and change your mind at any time.
Why this platform
Something we've never had before.
The ability to ask ZTTK-specific research questions directly to our community, and return findings back to families more quickly. It will also allow us to launch our first Participant-Initiated Treatment Observational Study, where families can share real-world data, with their doctor's guidance, as they try new treatments.
Your privacy matters.
- Run by the ZTTK SON-Shine Foundation.
- Information securely stored in our HIPAA-compliant database.
- Survey responses are de-identified and linked across studies only through your CRID.
Participant-Initiated Treatment Observational Study
A way for families to collect data on themselves or their SON-Shine after choosing, with their doctor, to try a new medication (prescribed off-label or over-the-counter) or supplement, so we can learn how these treatments affect people with ZTTK syndrome.
What it is:
- You log the start date, stop date & dosage
- Brief monthly surveys in Citizen Health
- Data stored securely in Studytrax via ZTTK Research Connect
- De-identified results may be published to help clinicians learn
What it isn't:
- Not a clinical trial. No one tells you to take a medication/supplement
- Not placebo-controlled
- The study does not recommend, assign, or monitor treatment
- Not medical advice. Always consult your doctor first
Your path: Ready, Set, Go!
GET READY — Week 1
- Talk to your doctor about the treatment you're considering and the right dosage
- Set a start date ~1–2 weeks out and put it on your calendar
GET SET — Week 2
- Create your CRID (if you don't have one)
- Sign the ZTTK Research Connect consent on Studytrax
- Sign up for Citizen Health (no medical records needed)
- Complete the Baseline Survey
GO! — Weeks 6–22+
- Take the monthly survey every 4 weeks (weeks 6, 10, 14, 18, 22)
- At 6 months, check in with your provider about continuing
- Keep going as long as you'd like
FINISH — Whenever you stop
- Consult your healthcare provider
- Email Dr. Cowen at mcowen@zttk.org
- Take the End Survey
Educational Materials
Coming soonWhat it is (and what it isn't!), FAQs, data storage & sharing · PDF
Ready, Set, Go! Framework
Week-by-week to-do's from your doctor visit to your final survey
Sign the Consent Form
Join through ZTTK Research Connect on Studytrax
Drug Repurposing Reference Materials
This folder includes lay-friendly materials for families and materials for clinicians summarizing existing safety data for three drug repurposing candidates identified through our ZTTK-specific in silico screen with Unravel Biosciences. All materials were prepared by our clinical pharmacist consultant.
For educational and informational purposes only. These reference materials are not medical advice or treatment recommendations. Please talk with a qualified healthcare professional before making any medication, supplement, or treatment decision. These articles or the use of these drugs have not been reviewed or approved by an IRB.
HOW WE GOT HERE
Nasal swabs
22 SON-Shines & 22 same-sex controls
RNA analysis
with Unravel Biosciences
In silico screen
40,000 compounds computationally screened
Priority list
by our clinical pharmacist consultant
Shared back
2026 Community Conference by our clinical pharmacist consultant
Questions about the study or consenting?
- Mara Cowen, PhD, Scientific Director · mcowen@zttk.org
- Ada Lio, Executive Director · alio@zttk.org
Technical issues?
Information provided by the ZTTK SON-Shine Foundation is strictly for educational purposes and is not medical advice, diagnosis, or treatment. Always consult a qualified medical professional or genetic counselor regarding any health condition or medical decision. Materials adapted from Kellan Weston, PhD, COMBINEDBrain, and approved by NorthStar IRB.
Your Data. Your Voice. Our Future.
Every family who participates strengthens our understanding of ZTTK and helps move us closer to better treatments.
TOGETHER, WE CAN MAKE A DIFFERENCE — THANK YOU FOR BEING PART OF OUR JOURNEY.
Questions about ZTTK Research Connect? Contact Dr. Mara Cowen, Scientific Director, ZTTK SON-Shine Foundation.