In the previous issues of ELA Info, you have seen how to register to Leuconnect e-cohort and how to communicate using the secure messaging tool. Today, you will discover how to fill in your "patient record". It gathers a set of information concerning your pathology, its situation, its evolution. It allows you to monitor your disease.
Your "patient file" is a bit like your online health record. It allows you to gather together information about your leukodystrophy, update it and store it. Your record is valuable, it helps you to trace important episodes of your care path or that of your child. Later, your child will have all the information about it and will, in turn, enrich the file with new elements. The information you provide will be kept confidential.
In the perspective of your inclusion in a clinical study initiated on Leuconnect, your information may be accessed by a health professional, investigator of the study, to evaluate your application.
Now that you are a member of Leuconnect e-cohort, you can fill in your "patient file" by first selecting your situation: I have a leukodystrophy or I do not have a leukodystrophy.
To do this, log on to your personal account (see the article in ELA Info magazine #104 Dec.2018 "Register on Leuconnect / to log in").
If you do not have a leukodystrophy, your "patient file" does not include medical information but you are part of Leuconnect e-cohort as a control patient. As such, you can participate in studies. You have access to your administrative profile and your public profile for the use of the secure internal messaging system on Leuconnect.
From your desk, in the tab "Report my leukodystrophy", you will have the opportunity to correct the statement regarding your situation.
If you have Leukodystrophy, click on "I have a leukodystrophy" to access your "patient file". You will now be able to fill in your medical data.
• Administrative Profile
The information provided during your registration is kept. You can find them in your administrative profile and complete them if you wish.
You can also enter family links with other patients by clicking on "Send an invitation". You can then fill in the person's email and what you are for him or what this person is for you by selecting your family link with this person from the drop-down menu accessible from "Relationship" (father, mother, uncle, aunt...).
This person will receive an invitation by email to create an account on Leuconnect (if he is not yet registered in the cohort) and to confirm the link that unites you.
• My leukodystrophy
Your patient file will first concern the "history of your disease". This part of your file will allow you to fill in the type of leukodystrophy you have. If you are symptomatic (if you have any obvious signs, characteristics of the disease), indicate the date of your first symptoms if you know it, what triggers you associate with the onset of your symptoms, and information about the diagnosis of your leukodystrophy (date, place, doctor).
All this information is optional and independent of each other. They will constitute your "patient file" that you can enrich your sandstone over time. Indeed, you can access your "patient file" at any time by reconnecting to your personal space.
Be careful, you must not forget to save the information you have entered before leaving the page.
To complete information on the history of your disease, you can also add information about your family history if you are aware of it. You can then select the relationship with this person, the type of leukodystrophy that concerns him and the date of his diagnosis.
• My healthcare professionals
The second part of your patient record concerns "your healthcare professionals". It is here that you can fill in the data concerning the healthcare professionals involved in your care path, that is to say its administrative data and its medical specialty. This information can be modified at any time.
• Disease management
The third part of your file concerns the "Disease management" and starts with a section on your rights and benefits that can be competed, concerning the possible administrative procedures.
The next item is "the impact of the disease on your daily life". On a scale of values from 1 to 10 (1 being the lowest value and 10 the highest), you can evaluate what you are most embarrassed about today. Nine criteria are listed (diet, sleep, pain, speech, sight, hearing, memory, motor activities, and communication skills). A comment box "free fields" in front of each criterion allows you to provide additional information if you wish. You can change these values at any time. The system will store all values. You can visualize the evolution of these scores when you want, by means of a graph, it allows you to follow the impact of these factors on your daily life over time. In the same way that you can follow this evolution on all the criteria that you have evaluated, you can decide to visualize only some of these criteria or only one of these criteria.
• My documents
Finally, your patient file offers you a storage space for "your documents" related to Leuconnect. This space is a real library for you. You can find there your documents concerning your care path. You will also find all the regulatory documents you have signed, specific to the platform and clinical studies to which you will apply. You can download them anytime and from anywhere.
• My account
In your patient file, you will also find "your account" email profile, the same one we talked about in the previous issue of ELA info and that allows you to communicate using Leuconnect internal and secure messaging tool (see the article in ELA News # 105 March 2019 "Communicating with Leuconnect").
Your patient file is yours. You can fill it from where you want and update it over time, with information you acquire or find back. It is a real tool for writing the history of your disease or that of your child. It is an online health book that collects all information about the disease. Later, your child can enrich it.
With your "patient file", you have the keys to centralize your information and thus optimize the monitoring of the disease.