I have a question about my enrollment in the research study and/or about the Roya Kabuki Clinic. Who do I contact?
For any questions related to the research study or the Roya Kabuki Clinic please contact the project coordinator, Tara, via email at firstname.lastname@example.org or phone at 857-218-KBKI (5254).
Who can enroll in the research study?
We typically enroll a ‘trio’, in other words, mom, dad, and the child with Kabuki Syndrome. You can still participate in the research study if enrolling the entire trio is not an option. If there are other siblings or family members that would like to enroll, please contact Tara.
If I enroll in the research program, do I also need to make a clinic appointment?
Participation in the research study and in the Roya Kabuki Clinic are independent of one another. You can choose to only enroll in research, to only be seen in the clinic, or to be involved in both.
I received a research enrollment packet in the mail. What do I do next?
Once you have a chance to review all of the paperwork in the packet you should contact Tara to go over your next steps. She will be able to help you go through the paperwork, including the consent forms, and answer any questions you may have.
My child sees multiple clinicians, who should we request medical records from?
We can request records from other clinicians. We usually recommend at least providing a release of records from your primary care physician or geneticist, or whomever you feel would have the most relevant medical history for your child.
My child has difficulty with blood draws, what should we do?
We understand that many children with KS have difficulty getting blood drawn, and some are only able to work with IVF teams. We encourage coordinating the blood draw for this study with an already scheduled clinical draw if possible, and with the medical professionals you are most comfortable with.
We can’t schedule all of our family’s draws on the same day, what do we do?
This is not a problem. Please contact Tara and she will provide you with the additional shipping materials needed to send the samples back separately.
Can we send the blood and urine samples back on separate days?
Yes, the samples are shipped back to us in separate packaging and the order in which we receive them has no impact on the research.
Will I be billed for the blood draw?
There are no costs associated with participating in this study. If you are charged for a blood draw or for any other study-related fees, please forward the bill and proof of payment to email@example.com to get reimbursed.
I need to get my blood drawn at an outpatient phlebotomy lab, what do I do to prepare?
You can take the blood sample kits to almost any outpatient phlebotomy lab. If you contact Tara prior to getting blood drawn, she will coordinate with the lab of your choosing and make sure they are aware you are coming for a research blood draw.
Can I get my blood drawn or send samples on a Friday or on a weekend?
All samples are sent overnight to the lab, so we ask that they are brought to a FedEx location Sunday-Thursday to ensure that a member of our team is here to receive them. Please contact Tara if you do need to get blood drawn and/or ship samples Friday-Sunday or before a holiday.
Can I, or my child, get blood drawn while taking antibiotics?
If you or your child was prescribed a short term course of antibiotics, we ask that you wait to get blood drawn until after you have completed the course of antibiotics. If you or your child are on a long term course of antibiotics, please contact Tara to coordinate your blood draw.