Because leukodystrophies are rare diseases, too few patients are involved in research for these diseases although they have often acquired a great knowledge of their pathology. For this, ELA France and ELA International have created LEUCONNECT, a platform to support clinical research.
It will allow you to be regularly informed on advances in research on leukodystrophies, ongoing clinical studies, new scientific publications and access to relevant information on understanding the mechanisms of the disease. With your participation, it will make it possible to include more patients in leukodystrophy clinical studies, thus constituting, online, a virtual cohort of patients, the e-cohort. Indeed, a cohort is a group of people with common characteristics. Researchers analyze "cohort" of patients to study these characteristics, for example by comparing them to other groups of people, or by identifying changes in this population over time.
With LEUCONNECT, you will be able to apply more easily to clinical studies initiated on the platform and be contacted by a health professional to participate but you will also be able to communicate from your secure personal messaging tool. It will allow you to be connected with other members of the e-cohort, anonymously and after accepting the principle, to discuss common issues related to the disease.
The platform is organized around two interfaces.
1 - Public interface
A public interface that gives you regularly updated scientific information, useful links, information on studies and news of research, publications.
2 – Your private account
Your private secured account from which you can register online to the cohort (a set of leukodystrophy patients), apply for clinical studies or be contacted by a health professional to participate.
Several steps are necessary. You must first create an account. This account will allow you to log in LEUCONNECT. You will then be able to sign the online consent form to register to the e-cohort.
You must complete these three steps to become a member of LEUCONNECT e-cohort.
1- To create your account:
• Create an account using your e-mail address and a password. The password you will choose must contain at least 10 characters, including a lowercase, an uppercase, a number, and a special character ( # _-+=@&’!?$*,;:) like for example Myaccount*1
• Fill in your administrative data (title, last name, first name, date of birth and of your cell phone number).
Create an account
To validate your registration onto LEUCONNECT, you must have read the login process and accepted the conditions of use of LEUCONNECT.
2- To log in:
The data that will be processed by the e-cohort are strongly protected and will require a two-step authentication at each login. This two-step authentication complies with the regulations in force regarding the protection of your data and guarantees you complete confidentiality for each of your connections.
You will be able to connect to your personal account with:
• Your username (your email address) and your password that you have set up when creating your account. This is Step 1 of the two-step authentication.
• To finalize your connection, you must log in to your personal e-mail account, where an automatically generated one-time code will be sent. It will allow you to connect to your personal account. This is Step 2 of the two-step authentication. It will be repeated with each new connection.
You are now in your personal account!
3- To finalize your registration to the e-cohort:
You will be able to finalize your registration to the e-cohort to participate in research. To do this, simply sign online the e-cohort form.
To electronically sign the e-cohort form you must, here again, follow 3 steps:
Step 1: You must first read the LEUCONNECT information and consent form and accept the document.
Step 2: You must read and accept the General Conditions of Use of the online signature system.
Step 3: You must electronically sign your e-cohort consent form.
You are now a member of the LEUCONNECT e-cohort!
Patient's account is personal and nominative.
Minor or unable to register alone in the e-cohort, you can accompany your child in his registration. For this, you will proceed in the same way as for you but with HIS personal e-mail (existing or to be created). You will create your child's account from HIS e-mail.
If your child is a minor, as the legal guardian of your child, you will indicate it on the registration page when creating his account, and you will receive a parental authorization on YOUR e-mail to authorize your child to open an account on LEUCONNECT. After activating your child's account from YOUR e-mail, you can register your child in the LEUCONNECT e-cohort from HIS account previously created on the platform.
Once a member of LEUCONNECT e-cohort, you can apply for clinical studies implemented on the platform or be contacted by a health professional to participate.
If you want, the platform will also allow you to communicate with other members of the e-cohort anonymously, to discuss common issues about the disease and to stay in touch with the community of patients concerned by leukodystrophies.
Join us in the next issue of ELA INFO to discover how to participate in clinical studies initiated on the platform and how to communicate with LEUCONNECT.