Leuconnect is a platform created at the initiative of ELA families to enable leukodystrophy patients and their parents to form a virtual, voluntary cohort to advance leukodystrophy research by participating in clinical studies.
Given the great rarity of leukodystrophies, their complexity and heterogeneity, it is essential for the scientific community working on these diseases to be able to collect information and health data from a greater number of patients living with the disease. The clinical studies conducted are more refined, more comprehensive and more relevant to the search for new treatments and to accelerate research into these diseases.
Since patients enrol themselves on Leuconnect, it is essential for the investigators who will include them in the studies to confirm the diagnosis of the applicants.
This is now possible thanks to a new development implemented on the platform.
If you are a member of the Leuconnect cohort or wish to become one, you can now enter your health data.
Currently your patient file allows you to gather a set of information concerning your condition, its environment and its evolution. You can update them and keep them. It allows you to monitor your illness, your care path or that of your child.
In addition to the data categories already implemented on the platform, you can now enter health data corresponding to the test results that establish the diagnosis of your leukodystrophy.
Your information may be taken into account by a healthcare professional or a study investigator, in order to study your application for a clinical study initiated on Leuconnect, with a view to including you in this study.
These data can now be entered on Leuconnect. They are used to complete your patient record.
This health data is essential for diagnosis. They are valuable because they confirm the diagnosis of leukodystrophy and they validate your eligibility to apply for Leuconnect clinical studies. Since the diagnosis will have been confirmed beforehand, you will not have to repeat these tests. With the results of these tests recorded in your Leuconnect patient file, you can be sure that your profile will be considered for participation in the studies.
You will find this new option from your personal account in your Leuconnect patient file under the heading "My Leukodystrophy". You can add your medical test result by indicating the name of the laboratory that performed the test and the date of the test. Finally you can attach the results document(s) by downloading them in pdf format. For biomarkers, the procedure is the same after selecting the type of biomarker from a drop-down menu. You can also attach the results document in pdf format. These documents will be stored in your document library and accessible at any time on your personal Leuconnect account. You can replace them whenever you want and/or add your latest analyses.
The protection of your data is ensured by the service provider, approved host of health data, the company Almerys. Only you and the doctors investigating the studies you are applying for on Leuconnect will have access to it. The Leuconnect platform has been developed in compliance with the regulations of the CNIL (French National Commission for Information Technologies and Civil Liberties) and has been subject to an impact analysis which guarantees compliance with the European requirements of the GDPR (General Data Protection Regulation).
Because genetic analyses and biomarkers are sensitive health data, their collection requires a specific level of protection. It has been subject to a request for authorisation from the CNIL. Leuconnect has received approval, testifying to this high level of protection. For the association it is a mark of recognition and for the people registered on Leuconnect it is a guarantee that their data is protected.
This novelty will strengthen the relevance of our patient cohort for the implementation of in-depth clinical studies of leukodystrophies and will thus facilitate the understanding of these diseases and the evolution of treatments.