The ADNP Kids Research Foundation has provided a grant for ADNP to take part in the multi syndrome NET Study, which includes 4 other similar rare genetic conditions.
The research study aims to address the lack of evaluation tools specifically catered to collecting information from patients with neurodevelopmental genetic syndromes such as ADNP Syndrome. If comprehensive assessments could successfully be done "remotely", this could increase the frequency and quality of rich information about how people with ADNP syndrome and other neurodevelopmental conditions function. This information can be used by future researchers to better understand different patterns of development and by clinicians to make it easier on their patients to provide information without having to travel to specialty care clinics. The new tool, designed with clinician, patient and caregiver involvement, will be more accurate, repeatable and sensitive to change than what is currently available.
Participant Criteria:
Compensation:
The research study aims to address the lack of evaluation tools specifically catered to collecting information from patients with neurodevelopmental genetic syndromes such as ADNP Syndrome. If comprehensive assessments could successfully be done "remotely", this could increase the frequency and quality of rich information about how people with ADNP syndrome and other neurodevelopmental conditions function. This information can be used by future researchers to better understand different patterns of development and by clinicians to make it easier on their patients to provide information without having to travel to specialty care clinics. The new tool, designed with clinician, patient and caregiver involvement, will be more accurate, repeatable and sensitive to change than what is currently available.
Participant Criteria:
- ADNP patients in the US or abroad
- A diagnosis of ADNP Syndrome
- Age 3-45
- A participating parent
- Access to a reliable internet connection
- Parent and child (if child is verbal) must be fluent in English for this phase
- Non-verbal children can participate
Compensation:
- Up to $180 US in Amazon gift cards will be awarded for participation in this research.
If you would like to learn more about this research opportunity,
please click here to join our
"CONTACT REGISTRY".
You will be emailed information about the upcoming Q&A regarding the project and participation.
If you would like to participate in the NET Study, please contact [email protected].
please click here to join our
"CONTACT REGISTRY".
You will be emailed information about the upcoming Q&A regarding the project and participation.
If you would like to participate in the NET Study, please contact [email protected].
