Learn more about your own hydrocephalus
The HC&ME App is a digital hydrocephalus diary that allows you to comprehensively document your life with hydrocephalus and everyday life with a shunt.
- Hydrocephalus diary to document well-being, symptoms and activities at different times of the day
- Simple overviews of all diary entries
- Digital shunt identification with the complete valve history: all shunts, all pressure settings
- Data export and possibility to share the overviews with others
- Joint further development and improvement through your feedback to our developers
- Data protection conformity: Data secured in the best possible way in accordance with DSGVO specifications
HC&ME – diary & research project
Because: We just don't know enough yet.
HC&ME is above all a hydrocephalus diary and all the data in the diary is yours. Our vision is to develop technologies that can improve the quality of life of hydrocephalus patients worldwide. A diary also does this because it can expand one's own knowledge about individual hydrocephalus.
However, if one looks at science, there is still a lot to be done: There are no large data analyses that provide a uniform overall picture for the pathophysiology or therapy of HC. In particular, the question of the factors that influence HC patients positively or negatively in everyday life has hardly been investigated.
The research project behind HC&ME offers for the first time the opportunity to study hydrocephalus outside the clinical setting and to share the results with the public. With the anonymous data transfer of patients themselves, we may be able to answer certain questions in a completely new way:
Which symptoms are associated with which activities of daily life?
In the context of hydrocephalus therapy, which everyday factors influence the quality of life of a group of affected persons?
The data will be evaluated and analyzed according to a properly defined study and the findings will finally be published. For a valid and meaningful result, many complete data sets are required: i.e. regularly maintained diary entries including some basic profile data over a sufficiently long period of at least 13,200 users. The success of the research project therefore strongly depends on the willingness to participate and the well-managed diary entries. Due to the very different data protection laws worldwide, only HC&ME users from Europe can currently participate in the research project. We are working on expanding this.
We would be pleased if you would like to support us and agree to the use of your – securely encrypted and anonymous – data. But we also understand very well if you want to use your HC&ME App for private purposes only – in this case of course no data from the HC&ME App will be transferred.
HC&ME App Impressions
Write down how you feel – simple and fast
"Every one of us experiences well-being differently. Sometimes the sun is shining and then there are moments where the sky is cloudy. Tangible reasons for this are not always easy to find. The symptoms can be pronounced to different degrees. Activities are performed by everyone with different intensity. Think of it as YOUR diary. Write down how you feel right now. With a few clicks it is very easy."
Overview of all entries
In an overview, all your symptoms and activities are in relation to each other. You can even enter any period of time: day, week, month. In addition, events such as surgeries or changes to pressure settings of your shunt, if you have made such entries in the shunt history.
The overviews help you to get to know yourself and your everyday life with hydrocephalus and your shunt better.
Digital patient pass – all your shunts and all pressure settings at a glanca and always with you
If you keep your shunt history in the HC&ME app up-to-date, you will always have your own digital patient pass with you. Everything important can be tracked here and reconfigured again and again:
Valves, temporal valve history, valve pressure stages, pressure stage changes, implantation and explantation date, reasons for surgery, personal notes.
Share data export & overviews
All diary data entered can be generated as a PDF or CSV file at the touch of a button and sent by e-mail. However, they will then also leave the protected area of the app, which is compliant with the DSGVO regulations. So think carefully about who you really want to share your data with.
If you share your data for research purposes, this is done simply by giving consent in the profile, not through this export function. Your data will then be shared automatically and of course encrypted and anonymized.
Individualization of the diary – easily customize symptoms and activities in the profile
Every hydrocephalus is very individual – so are the symptoms and daily activities. Therefore you can easily configure your recurring symptoms and activities in the profile. Only the symptoms and activities set up there will still be displayed in the diary. This makes it easier to maintain an overview when documenting and also in the overview itself.