How to Prepare for Your Visit
Prior to your visit to the Epigenetic Syndromes Clinic, we will ask your permission to obtain your child’s medical records. Upon referral or inquiry into coming to see us, we ask that you let us know all the hospitals and clinics in which your child has been seen. This helps us to ensure that we have all the needed information for your visit. Obtaining genetic testing reports is also important prior to your family’s visit.
It is also helpful to make sure a referral to our clinic is placed by a provider who your child sees before our clinic visit. This is not a requirement for scheduling or to be seen.
During our visit, we will talk about your child’s health history including information about their development. This may be helpful to know prior to our visit as you may have past records that could be helpful. Examples of helpful information include past school reports from IEP or educational evaluations.
We have found that it is helpful to write down questions for our team prior to your visit. We may not be able to answer all in our clinic timeframe, but we can continue to work together following the visit to help answer your remaining questions.
What to Expect for Your Visit
During your visit, we will discuss your child’s medical history, family history and development in detail. We will also ask questions about common complications and medical problems that can happen in your child’s specific epigenetic syndrome. We also want to learn what is affecting your child and family most. We will use this information to help with patient care and to direct future research endeavors. We will also perform a physical exam and discuss the child’s particular syndrome as it pertains to your child and family. We are also ready to answer questions that your child or family may have.
Additionally, we aim to utilize our experience gained from our patients and families to help manage and treat these conditions. To do this, we invite patients to become involved in ongoing research. Our clinic’s database includes our participants’ medical history and other information. Participants will be invited to complete questionnaires and surveys in the future. Additionally, we invite you to participate in our Discover Together Biobank where participants share leftover clinical samples or donate blood, saliva or skin for future studies. All these aspects of our clinic are optional, or you can choose which parts in which to participate. Your treatment will not be affected in any way if your family chooses not to participate.
If you are interested in learning more about our research, email us at firstname.lastname@example.org.