What to Expect During Your Visit
Please plan to arrive 20 minutes before your appointment to allow time for pre-registration. Bring your insurance cards and a list of all current medications, both prescription and over-the-counter (include names and dosages). It helps to prepare a list of questions and concerns you’d like addressed.
New patients are those who have never been seen at the Johns Hopkins NF Center or those who have not returned in over three years.
New patients start with an intake clinic visit. After that, you will be scheduled for a comprehensive new patient visit.
Intake Clinic Visit
Before your visit, you will receive a new patient questionnaire. Please complete it and bring it to your intake visit, along with any relevant medical records (clinic notes, procedure notes, pathology reports, imaging on CD, etc.).
During your intake visit, you will meet with our clinic coordinator and nurse practitioner, Shannon Langmead, R.N., M.S.N., C.R.N.P., C.N.R.N. Your appointment will take about 45 minutes. We will ask how you were diagnosed, request your medical history and discuss current symptoms. We will review records you have brought and determine if there are any tests or evaluations that will make your new patient appointment with our comprehensive team more valuable. We will also introduce you to our clinic and let you know what to expect at your future appointments.
You will leave your first visit with a plan and a schedule, including any tests or evaluations you may need to undergo. (Sometimes, insurance restrictions limit us from scheduling imaging appointments right after your visit. If this is the case, you will receive the information for these appointments later.)
Intake clinic appointments are available on Tuesdays, Wednesdays and Thursdays.
Comprehensive New Patient Visit
During your comprehensive new patient visit, you will likely have evaluations with several members of our team and may have additional imaging or consultations scheduled as well. We will review your imaging scans, perform a comprehensive exam, provide education and address your questions. We may talk to you about research studies open for participation now or in the near future.
This can be a very long day. We try to build in time for you to get lunch, but please feel free to bring snacks. You may also want to bring something to help pass the time between visits (a book or magazine, or a friend to keep you company). We try our best to stay on time, but NF is complicated, and we want to ensure everyone is given the time they deserve during visits. We ask for your patience, and we promise that you too will get the time you need with our team to have all of your questions and concerns addressed.
Your new patient comprehensive visit will be scheduled on either the first Monday or last Friday of the month, barring holidays or clinic closings.
Returning patients are those who have been seen at the Johns Hopkins NF Center within the last three years.
Most patients are seen for follow-up at least annually. Our office will automatically schedule your annual visit at a similar date and time of day as your most recent visit to help keep both you and our team on track with annual follow-ups. If the time and date do not work for you, please call to reschedule.
If you need an evaluation for new symptoms or new concerns, please call the NF Center to schedule an appointment. If you need urgent or emergency evaluation, please go to an emergency room (ER.)
Follow-up appointments are available on Tuesdays, Wednesdays and Thursdays.
PATIENT STORYPedal to the Medal
The Comprehensive Neurofibromatosis Center uses an innovative funding approach to advance research and speed treatments for patients. Meet two of our patients, identical twins Tamika and Laticia, who have been part of our clinic for over a decade, and read more about our approach to research and care.