Clinical Summary of Medical Record
If you choose to participate in our program, undergraduate students who have been trained by participating clinicians and researchers in our rare disease clinical research class can develop a clinical summary based on the information provided in your medical record. A group of three students will read through your entire medical history and create a summary that will include your patient history , a chronological summary of all your visits with any important presentation of symptoms/illnesses, major hospitalizations and/or procedures, and all of the medication you have taken or are currently taken. It will also include a comprehensive list of all the physicians you have seen along with their contact information.
We believe this will provide your current and future physicians with a concise medical summary of your history and highlight any significant changes in your health so that they may better understand your specific history with the disease.
Password Protected Electronic Copy of Medical Record
We understand that you may have hundreds of pages of medical records filed away at home or in various physician offices. Thus, we will provide you with a password protected zip file of your entire medical record so that you may have on hand to use at your own convenience. It will save space in your home and is easily portable on a zip drive to upload to your laptop, iPad, or physician’s computer.
Student-Patient Working Group
Since we strive to make this a collaborative learning process for students as well, if you choose to participate we can provide you with a 2-3 trained students who will work in a group. There will be regular contact with students throughout the school semester where they can assist you with obtaining and submitting your medical record. We have also had families share videos, photos and blogs with us which can also be added to the patient medical record.