We need you. The closer we can follow you, the sooner we can understand your issues and the closer it brings us to finding a treatment. Our Natural History Study is currently open and recruiting patients with FD.
There are several ways to be involved:
- Patients with FD being evaluated at the NYU Dysautonomia Center in New York, at the Hadassah Hebrew University Medical Center or at the Sheba Medical Center in Israel will have the option to be enrolled in the Natural History Study. All three centers share the same database regardless of the different locations.
- If, for whatever reason, you are unable to visit New York or Israel, you can still send medical records from your local doctors. In addition to receiving medical recommendations by the FD doctors, your information will be included in the database.
What type of clinical information should you send?
- Your most recent sleep study report
- Your most recent swallow study report
- Your most recent office visit notes from your neurologist or other specialist
- Your most recent chest-CT or Chest x-ray report. Ideally you should also send a CD/DVD with the images.
- Your most recent eye evaluation, ideally including retinal optical coherence tomography (OCT) and other visual function tests
- Your most recent pulmonary function tests
- 24-hour blood pressure recordings
- Results from regular blood or urine tests
- Notes from hospital admissions or surgical admissions
- A current medication list
These tests are routinely recommended for patients with FD as part of their standard medical care. They help screen for potential problems and determine when treatments are necessary. If you are still unsure of what to send, send us your information from any visit to a doctor.
The FD Questionnaire: The FD Questionnaire has been developed over several years to provide doctors with the information they need in clinical practice. It is a series of questions that cover all the body systems, how they function, and identify common complications at different stages of the disease. The questionnaire is specifically designed for patients with FD, to be filled on a yearly basis. Filling it out will help families prepare for their visits with doctors. The FD Center will send you a copy of the questionnaire as soon as you schedule your appointment (212-263-7225).
What will happen with my information? The information received will be stored in specially designed databases, an idea originally implemented by Dr. Felicia Axelrod. It will be used by the research team to answer pressing clinical research questions. It allows us to look at trends overtime and examine which treatments are truly effective for treating FD. It allows us to look for patterns to provide guidelines that will shape clinical practice. The study is designed to support clinical trial readiness to speed up drug development to improve the lives of patients with FD. The goal is to help other researchers working and collaborating on FD to use this information to support their scientific work.
Official sites for the Natural History Study of FD:
In the United States – NYU Dysautonomia Center, 530 First Avenue, Suite 9Q, New York, NY, 10016.
In Israel – 1) Sheba Medical Center, Tel Hashomer, Derech Sheba 2, Ramat Gan, Israel and 2) Pediatric Pulmonology and Sleep, Hadassah Hebrew University Medical Center, Jerusalem, Israel.
How is my information protected? The information collected in the natural history study is stored in a secure encrypted server supported by NYU Langone Health MCIT. Access to identifying information is restricted to NYU Langone Health administered terminals. Patients should transmit their medical records through data-protected safe channels, including MyChart and NYU Langone Safe-Email Portal. Information and support for this can be provided. Data shared for research is de-identified and entered into a secure online data collection platform (RedCap), with controlled access.