Dragonfly Natural History Study (NHS) – Clinical Examination

Dragonfly Natural History Study (NHS) – Clinical Examination Registration Form

Important notice
This form is for NHS clinical examinations only.

Conference registration is handled separately. To register for the 4th International CTNNB1 Syndrome Conference, please follow this link.

Before completing your payment, please contact our study staff at  nhs@ctnnb1-foundation.org  if you have any questions or concerns,
as tickets are non-refundable once purchased.

Study registration period

• Open until: March 1, 2026
• Or until all available examination slots are filled

Please note that the number of participants per study site is limited. Because this is a long-term (longitudinal) study, children who are already enrolled in the Dragonfly Study will be prioritized and registered first, followed by new participants as capacity allows.

Please note that examinations for each child typically take two days (usually one day for medical/physical examinations and one day for psychological assessments).

For Ljubljana and Boston, you may indicate your preferred two examination days in the registration comment section, and we will do our best to accommodate your request.

For Barcelona, we kindly ask that you plan your stay for the entire examination period (June 16–19) to allow for scheduling and organizational requirements.

Welcome message

Dear parents and caregivers,

We warmly invite you to register your child for participation in the Dragonfly Study, the first international CTNNB1 Natural History Study.

The Dragonfly Study launched in 2024 as a critical step toward our first CTNNB1 clinical trial. Since then, more than 100 families have participated across multiple countries.

Since then, we have opened several clinical sites to reduce the burden of families needed to travel, including Slovenia, Spain, United States, Australia, Canada (starting in Q1 2026) and Brazil (planned for 2026).

Taking part in the Dragonfly study is not required to apply for the GAIN-CTNNB1 trial. However, children who participate in Dragonfly have a higher likelihood of being selected. 

Why participation matters

In the GAIN-CTNNB1 clinical trial, each child serves as their own control. To demonstrate that a future therapy truly works, we must compare development before and after treatment. Longitudinal data collected over months or years prior to dosing is essential for proving efficacy and advancing treatments.

REGISTRATION GUIDE

Please read carefully before booking tickets

*Important Notice: Please Do Not Translate This Page

To ensure a smooth and accurate registration process, we kindly ask that you do not use your browser’s direct translation feature while filling out the conference registration form. Using automatic translation can sometimes alter the form fields, leading to errors or incomplete submissions.

We’ve made every effort to make the registration form as accessible as possible. If you’re facing language barriers or need assistance with the form, please do not hesitate to contact us at bruno@ctnnb1-foundation.org. Our team is more than happy to assist you in your native language.

Thank you for your cooperation and understanding. We look forward to your successful registration and participation in the conference.

Step 1: Select Ticket based on preferred Examination location

Over the past several years, our clinical team has worked with extraordinary dedication to bring the Dragonfly study to this stage. Each year, alongside our international CTNNB1 conference, we organize clinical examination days where families can have their children assessed as part of the study. To reduce costs and enable broad participation, our entire clinical team has traditionally volunteered their time during these examination days, working over multiple days without compensation. For clinical examinations conducted once per year during the conference, the medical team has agreed to continue providing their work on a voluntary basis.

As the Dragonfly Study has expanded internationally, it has become unsustainable to ask the clinical team to work for free across multiple locations throughout the year. For this reason, the CTNNB1 Foundation must cover costs of flights and accommodation for clinicians and their compensations.

Ongoing participants

For families whose children have already participated in at least one Dragonfly NHS examination, the CTNNB1 Foundation will cover expenses related to the study. 

Families are asked to make a €100 contribution per annual visit, where applicable, to confirm their appointment and ensure attendance.

This contribution is required because, in previous years, examination slots were reserved but not used, despite significant effort by the medical team to attend.

New participants

For families joining the Dragonfly Study for the first time, the required contribution depends on:

• The study location
• Whether the site is already externally funded
• The need to cover travel and accommodation for the clinical team

Due to a significant slowdown in donations to the CTNNB1 Foundation, new participant contributions are necessary to enable expansion of the study and acceptance of additional children.

Location-specific funding notes

• Australia (Sydney): The site is fully funded by UNSW Sydney.
• Canada (Québec): Clinical examinations are conducted at CHU de Québec – Université Laval.
  • The €990 contribution reflects the contracted cost per patient for the first visit.
  • For each subsequent annual visit at CHU de Québec, the examination cost will be €740.
• United States (Boston):
  – Hotel: Homewood Suites by Hilton Boston Seaport District
  – Address: 670 Summer St, Boston, MA 02210, United States
  
  Current capacity allows examinations only for returning participants.
  Accepting new participants requires covering additional costs for:
  • Medical and psychological assessments
  • Travel and accommodation for an expanded clinical team
• Slovenia (Ljubljana):
  For new participants, as the medical team is locally based, families are asked to cover only the direct costs related to clinical examinations.

Important note on future visits

The contributions listed below apply only to the first year of participation. Once a child is enrolled in the Dragonfly Study, the same annual contribution (€100 per yearly visit, where applicable) will apply in subsequent years in all locations, except at CHU de Québec – Université Laval, where study is being managed by the hospital.

Step 2: Fill in Registration Information

• Step 2A: Ongoing participant – prepare your Dragonfy ID code and review whether you have submitted previously any of the clinical data (e.g. EEG, MRI, etc).
• Step 2B: New participant – your Dragonfly ID will be given as soon as soon as you register and will be sent separately. 

Step 3: Submit booking
Click “SUBMIT BOOKING” button at the end of the page.

Step 4: Provide payment details
Click “Pay on Donorbox” button, and enter the necessary information to proceed with payment (in the next page after submission of this form)

Step 5: Provide payment details
Enter the necessary information to proceed with payment (in the next page after submission of this form)

Step 6: Add a donation (optional)
You can choose to include a donation to support our work.

Step 7: Complete payment

• a) Select “Card” as the payment method.
• b) Enter your credit card details and complete the transaction.

Step 8: Receive your tickets
Once your booking is confirmed, you will receive your registration tickets via email.

Important information about registration and payment
Conference tickets are considered a donation to the CTNNB1 Foundation.
As a non-profit organization, we are unfortunately unable to offer refunds for donations.
By completing this registration, you acknowledge that ticket purchases are non-refundable.