Thank you for your interest in this research study being conducted at the University of Kansas Medical Center and the University of Kansas-Lawrence.
We are interested in understanding behavioral and brain based issues associated with the Fragile X gene, FMR1.
Study volunteers will complete:
-A blood draw
-Tests of brain function at the University of Kansas Medical Center in Kansas City
-Tests of motor skills and thinking abilities at KU in Lawrence.
Our tests of brain function are non-invasive and do not involve any radiation.
Testing will involve at least 1 visit to University of Medical Center and 1 visit to our lab in Lawrence (each visit is 2-4 hours, depending on availability). After approximately 24 months, you may be invited back to the lab to repeat the 2 visits of testing, as funding allows.
For questions about the rights of research participants, you may contact the KUMC Institutional Review Board (IRB) at (913) 588-1240 or humansubjects@kumc.edu
If you are interested in participating, please fill out this screener form. This screener will help the research team determine if you are eligible for our current studies. A member of the research team will contact you as soon as possible once this screener has been reviewed.
Please feel free to email (brainlab@ku.edu) or call (785) 864-4461 with any questions.
What is your birthdate (ex. MM/DD/YYYY)?
Today M-D-Y
Male
Female
Other
Transmale/transman/FTM
Transfemale/transwoman/MTF
Genderqueer/gender non-conforming
Different identity
Prefer not to say
What is the sex you were assigned at birth?
Male
Female
Is it okay to leave a voicemail message on this phone?
Yes
No
Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska Nevada New Hampshire New Jersey New Mexico New York North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin Wyoming Canada Other
Other country or US territory not listed above
How would you describe your role in this study?
Premutation carrier
Premutation carrier diagnosed with FXTAS (Fragile X Tremor Ataxia Syndrome)
Healthy control- without a premutation or FXTAS.
How were you diagnosed with an FMR1 premutation?
Where did you receive this diagnosis?
Do you have a copy of these test results that you can share as a study participant?
Yes
No
I don't know
Select any diagnoses you currently have or have received in the past. Please also check the box if you currently suspect one or more of these diagnoses.
Select any medical condition you have currently or have had in the past:
Please describe health condition:
Please explain mental health conditions
Please list any surgeries you've had (include approximate dates):
Have you ever had a head injury?
Yes
No
I don't know
Please briefly describe the event and severity of the head injury
How many injuries have you had?
When did the head injury(s) occur (approximately)
Have you ever had any post-traumatic memory loss?
Yes
No
I don't know
Did you lose consciousness after your head injury?
Yes
No
I don't know
Were there any lasting effects after your head injury? If so, please describe.
Were you hospitalized after your head injury?
Yes
No
I don't know
Did you receive any neuroimaging tests (MRI, CT, X-ray, etc)?
Yes
No
I don't know
What were the results of the neuroimaging test?
Family History:
Select any of the following if your first or second degree relatives (parents, children, siblings, aunt/uncle, grandparents) have been diagnosed.
Please describe family history (e.g., who was diagnosed, what is the current diagnosis)
Do you have any allergies?
Yes
No
I don't know
What are you allergic to?
Please indicate your consumption of:
Non-drinker
Drinker
Non-drinker
1 to 3 drinks
4 to 6 drinks
7 drinks or more
Non-user
User
Non-user
Past user
Current user
Please indicate the substance and estimate the frequency
Please list any medications you are currently taking (excluding topical medications) or have previously been prescribed.
Part of our study involves an MRI scan. If you have concerns or questions about it, please indicate here:
Do you have claustrophobia (extreme fear of confined spaces)?
Yes
No
I don't know
Are you sensitive to loud noises?
Yes
No
I don't know
Are you able to lie flat?
Yes
No
I don't know
*THIS IS AN OLD VERSION OF THE MRI SAFETY SCREENER - 10/13/2023 - 8/5/2024
Do you have any metal in your body? (i.e. braces, body piercings such as ears, metal fragments, shrapnel, a bullet etc.)
Yes
No
I don't know
*THIS IS AN OLD VERSION OF THE MRI SAFETY SCREENER - 10/13/2023 - 8/5/2024
Please explain
Have you previously worked with metals (i.e. welding), where a metal fragment may have gotten into your eye?
Yes
No
I don't know
*THIS IS AN OLD VERSION OF THE MRI SAFETY SCREENER - 10/13/2023 - 8/5/2024
Do you currently have oral braces, a permanent retainer, or other dental implants?
Yes
No
I don't know
*THIS IS AN OLD VERSION OF THE MRI SAFETY SCREENER - 10/13/2023 - 8/5/2024
Please explain
Do you have any of the following:
Cardiac Pacemaker or Defribrillator
Gastic Pacemaker
Neurostimulation Device
Bladder Stimulator
Heart Valve Replacement
Cochlear Implant
Medication/Insulin Pump
Hydrocephalus/Spinal Shunt
Coils, Stents, Filters, Spinal Shunt
Aneurysm/Vascular Clips
Eyelid Sping/Wire
Prosthetic Device
Hearing Aids, Lyric Device
Intrauterine Device (IUD)
Bullet, BB, Foreign Body
History of Metal in Eyes
Dentures, Partials, Braces, Retainers
Medication Skin Patch
Permanent Eyeliner
Wig, Weave, Extensions
Implanted Object
Body Piercing(s)
Pregnant
Breastfeeding
Joint Replacement
Pins/Screws/Plates from surgery
Continuous Glucose Monitor
Implanted Heart Monitor
Drug Infusion Pump
Please indicate the surgery date and the type of joint replacement.
Please indicate the date your pins/screws/plates from surgery were placed.
Is your proesthetic device removable for the MRI scan?
Are your body piercings removable for the MRI scan?
Do you have a device card for your implanted device(s)?
Have you ever had surgery?
Yes
No
If so, please describe the type of surgery and indicate the year it occurred.
What is your native language?
English
Spanish
Other
What is your ability to understand English?
Beginner (May or may not be able to understand single words, cannot understand sentences)
Intermediate (Can understand 1-2 step instructions)
Advanced (Can understand more than 2 step instructions)
How did you find out about this study?
I would like to be contacted for participation in future research studies regarding Fragile X
Yes
No
Thank you for your interest in our studies.
What happens next?
After you click "submit", our team will review your responses and get back to you as soon as possible.
In case you have any further questions or concerns, please feel free to contact us by phone or email at (785)864-4461 or at brainlab@ku.edu.