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Some Features

Clinic History

In the clinic history you can manage your own calendar of seizures, drug history, and get various reports of the patient.

Phenotype

In the Phenotype module, you can add a list of patient symptoms.

Events calendar

On the Event Calendar, you can add medical appointments or any type of desired event.

Scales

The module scales, quantifies the condition of the patient in different aspects, such as cognitive status, quality of sleep, quality of life, etc.

Documents

Keep everything related to the disease in one place, skip having hundreds of medical reports in a drawer without giving them useful.

Clinical trial

Report the evolution of a clinical trial has never been so simple, forget the long phone calls to report results

Multi-platform & Responsive Design

Available in web version, Android and iOS. Responsive Design, to Provide an optimal viewing experience and interaction (from desktop computer monitors to mobile phones).

Manage the disease from anywhere

App Shots

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FAQ

General
Wacean is an online platform created by the Dravet Syndrome Foundation, in order to have a database of patients diagnosed with Dravet Syndrome and other refractory epilepsies with comorbidities.

In this document we will refer to this platform either as "Wacean", "Portal", "Application", "Platform".

Dravet Syndrome Foundation is a nonprofit patient organization focused on accelerating the development of new treatments for Dravet syndrome and related encephalopathies. Its aim is to bring together researchers, doctors, regulators, industry, governments and patients to facilitate the diagnosis and treatment of this disease.

Having good data quality is, nowadays, one of the key elements in the development of medicine. One of the main clinical data sources are the patients themselves. This data is health information created, recorded or collected from patients or caregivers or other family members - to help better address way knowledge of a health problem.

DSF has a vision where technology plays an important role in health care. We believe that technology can be leveraged to improve the lives of patients and caregivers, by using it, among other things, to collect data from the patients themselves. Using this data can complement existing data, fill knowledge gaps in health information and provide a more comprehensive view of the patient experience.

The idea of creating this platform arose from the need to create a Patient Registry, Having the intention to give this tool a tangible value for the patient and his family, the mere registration was extended with features that allow monitoring and completely management of the disease from the same site, whilst providing relevant and useful medical information. Most of the data is introduced to the platform by patients or caregivers, continuously, so that the information is constantly updated.

This platform has been initially created for patients diagnosed with Dravet Syndrome and has been designed to have information on the number of people affected in each country in order to help research on the disease, and to facilitate the search for candidates for new clinical trials. In the case of a trial made in the concerned country, the registry could facilitate the identification of the most appropriate candidates to participate in it. If so they wish.
It is important to note that the owner of the data entered on this platform is the patient or person in charge. In any case, the patient can voluntarily share information with other caregivers, doctors, or other third parties and may revoke permission at any time.
At this time with the doctors you want. To share information with a physician, in the tool itself you can find the option "Manage Users", from which a doctor can be invited by email to create an account on the site and then will be able to see the patient´s data.
The use of the information will be kept confidential. Therefore, the identity of the patient will always be protected. Similarly, the data can only be made public in reports, scientific meetings, medical conferences or publications. The data will be reported as anonymous and aggregated, ie. as percentages or numeric data with no possibility of identifying the participants prior their consent, and in any case individually. The data will not be provided to any other kind of research without the patient permission.
  • Comprehensive management of the disease

    Centralization of medical information used by patients / caregivers.

    Wacean is a tool that improves patient care by facilitating the capture and integration of data, producing statistics, producing reports that can shared with other caregivers, doctors, professors, researchers...

  • Patient Registry

    Records are a common need for patient organizations, institutions and governments. The lack of centralized records is a problem when a greater visibility on different diseases is needed. It is also a necessity to keep them updated. Wacean is meant to be used as a daily tool to manage the disease. This will keep the information updated, acting as a registry.

  • Clinical Trials

    • The design of this Portal meets the requirements to be used as a digital diary in clinical trials. It could be used for daily data capture when the patient is involved in a trial.

    • Facilitates the identification and recruitment of patients for clinical trials. Since the Platform will store data on patient symptoms, treatments and location, it can be used as a recruitment tool for clinical trials.

  • Pharmacovigilance

    Since Wacean stores information about the use of medication and symptoms, it can be used to collect and monitor adverse effects on the evolution of drugs intake.

  • Medical Research

    In this kind of research, the number of patients is usually limited to a cohort of patients with a particular doctor, or a small group of collaborators. Sometimes this number is insufficient to validate the hypothesis.

    Clinical information collected by Wacean can be used for medical research,allowing researchers to reach a larger population than they would normally handle.

  • Other research

    Access to quality data is a challenge for research. Only large institutions are able to collect enough consolidated clinical data to support their hypotheses during their research.

    Through Wacean, anonym data can be shared by the scientific community for further analysis. This may generate more awareness of the disease and lay the foundations for future clinical development.

In any case, we hope that the results obtained from the use of Wacean will allow us to improve the knowledge about the disease, which will benefit all patients affected by it.

The platform is free for patients and their caregivers.
Use of the application

On the right corner of the homepage of Wacean (wacean.com), you will find a flag, where you can choose between English, Portugués and Spanish. Later on, more languages will be incorporated to the Platform.

1. By accessing wacean.com there is a button "Login".

Clicking on it leads to a page where you must enter a user name and password.

2. The first time you access the Portal you have to create the account, for that you need to click "Register now".

This brings us to another page where you have to enter the user's email, and a password, this will be used to access the Portal from now on.

3. Also you have to choose the "profile". Normally it is "patient" (only doctors should choose the "Clinical" profile)

Once this process is completed, click "Create an account".

Then the informed consent is shown and it is necessary to read and understand before accepting it.

We then get a message:

4. You should go to the inbox of your email, where you will have received a message with the subject "Activate account". Open it and click on the "Activate account" link to continue with the registration process. The system will take you directly to the login page, where, now, you can enter your credentials to get into your newly created account.

If this email is not received in a few minutes, check your Spam tray. If it still does not arrive, write to support@wacean.com

  • Apple (iPad, iPhone)

    In iTunes App Store search for "Wacean". Although the app is free, you will have to enter the iTunes Apple ID and password to download as in any other application.

  • Android

    In Google Play Store search "Wacean".

The process to create an account from these apps is the same as via the web (explained in the previously)

In the toolbar (purple) there is a question mark. When you click on it you get several options:

In "Support" you can send a question or comment to the support team directly.

"FAQ" is the section where most common questions among users are resolved.

"Tutorial" is a guide on the application, passing through the different screens explaining each one.

There are currently two main roles: administrator and physician. The Platform is prepared for a future that may include other patient groups, researchers and other roles. Each will have a different access to data, access will always be given with previous patiente consent.

The user is usually the caregiver or person in charge of the patient, who created the account. The data contained in the application is patient data.

Although not as common, a same family can have two or more patients with a disease that requires follow-up on the site. The number of patients an administrator (user) can manage is unlimited.

From the home page of the Platform, in "Manage Users" section you can add more accounts to share data from the same patient (for example, when there are two or more caregivers - mother, father, siblings, caregivers ... – who want to view or modify information)

Clicking on this option, the system allows users to "invite" new users via e-mail. The guest will receive an email and by following the instructions can create an account that will automatically be associated with the account that invited him, sharing information about the same patient.

This module uses Human Phenotype Ontology (HPO) standard code to capture patient clinical history or symptoms in a way that is standardized and suitable for machine analysis. HPO has been selected by different organizations as the gold standard for phenotyping.

The module enables easy phenotype keyword search or filtering through a list of options.

Validation by clinician – Once the patient or caregiver has completed the list of symptoms or every time they introduce a change (adding, deleting), the module changes status to “to be validated”. This is then notified to the patient's clinician who will have electronic access to their patients data and can confirm the new phenotype list therefore validating it. Phenotypes can also be added directly by the clinician.

This module is designed to store gene sequence variations. These variations are added into the platform using a VCF file. The user upload a VCF into the platform and the systems extracts the individual variations with all the relevant annotation.

The module will add also capacity to store genetic reports to be use for clinical practice.

For clinicians the module will incorporate filtering functions to support diagnosis.

Wacean has been developed taking requests and suggestions from Dravet families. It is a constantly evolving tool and therefore will continue to grow over time.

To suggest a new feature, you must send a comment via the "Support" option as detailed as possible explaining what is proposed. Our team will study the request and estimate the time required to incorporate it if that feature clearly adds value to the platform.

At any time, through the "support" option you can send a request to include the drug that was not in the provided drugs list. Our team will validate their inclusion and notify when it is included.

The list of drugs Platform contains the drugs are usually taken in Dravet.

To delete data and/or the user account you can write in the "Support" option, indicating one of two options:

  • a) Delete the account and all associated data permanently
  • b) Delete the account and keep patient data anonymously so they can be used in other studies or research

Get in contact with Us

EIC-BBK
Doctor Fleming, 30
28036 Madrid (Spain)
eicbbk@dravetfoundation.eu