Thank you for your interest. You can find more infomation about our project below, taken from
our website.
Traditionally, all data generated by scientific research is collected in the form of a scientific article, which is published in a peer reviewed scientific journal, and it is usually made available on a public database such as the NIH’s pubmed database (
https://www.ncbi.nlm.nih.gov/pubmed). When a novel therapeutic strategy, such as our novel cell-based therapy for HIV, SupT1 cell infusion therapy, goes through the several stages of clinical research, different research teams all over the world may perform the research. And once the therapy is finally approved for human treatment, different clinicians all over the world may administer the treatment to patients. This means that when a research team wants to perform clinical research, they have to go through the tedious and time consuming process of searching for all the published data from previous trials, read all the papers, select the useful data, and make the best possible interpretation of the data to create a protocol for their trial, personalizing it for their typology of patients. In fact, every patient may have different individual characteristics (e.g., age, ethnicity, HIV tropism) and thus may require personalized treatment protocols. And the same issue is present when clinicians begin to administer an approved treatment to patients; they have to go through all the papers and make a best guess on what treatment protocol should be used. As mentioned, this process of accessing clinical data can be quite tedious and time consuming, but it can also introduce human error.
A Possible Solution: A Decentralized Database Using the Blockchain to Store and Access Clinical Data
A possible solution to the challenge posed by having to access clinical data from the current ancient system could be provided by the creation of a decentralized database for clinical data using the blockchain technology. This is what we are proposing with the creation of the “You’re not alone” application. First, let’s focus on the blockchain aspect of the app, we will explain why it has such a name later. The “You’re not alone” app would feature a user-friendly interface allowing any clinician running a clinical investigation to enter the data produced by their trials. The application would allow the input of a broad range of individual parameters for each treated patient, such as age, ethnicity, disease progression stage, viral tropism of HIV virus carried, along with the clinical protocol used (e.g., dosage of SupT1 cells infused each week) and the outcome of the treatment (e.g., viral load, CD4+ T cell count). The app would then access and elaborate the data on the fly; statistical analysis (means, standard deviations, correlations, power) and even the elaboration of suggested treatment profiles that could work best for each type of patient could be performed. This would take away the burden of having to manually search and process all the data as in the current centralized databases. And such an application would have an infinite potential for growing. For instance, an amazing feature could be to store in the database the genotypic information of the HIV virus carried by each patient, allowing to keep track of all mutations and genetic modifications caused by the treatment as well as the resulting viral phenotypic changes. Therefore, such a database would be constantly growing and evolving as new parameters are added to it, and it would be always available, anytime, anywhere, and to anyone connected.
Another important aspect is that usually in a scientific publication the raw data is not published but instead a graphical representation is used to summarize the data; another amazing feature of a decentralized database is that due to not having the editorial constraints of a scientific journal, the whole raw data generated by any research could be included in the database. Such an app would help speed up tremendously the clinical development stages of our AIDS cure research; it could be a game changer.
Now, let’s explain why we named the application “You’re not alone”. The application will also document the progress of our AIDS cure research project, featuring periodic updates such as articles, vlogs. This will create a community where HIV seropositive people can stay up to the date, comment, share, interact with us working on the cure, and with each others. Something that creates a bridge between HIV seropositive people and us research scientists working on the cure. Something that allows the HIV seropositive community and anyone interested to be part of this journey. Something that can send the message that they are not alone in their battle. That we are fighting for them. That we care about them. A message of hope. Our vision and intention is therefore to create an application that will also act as a social app for HIV seropositive people to participate and create new topics and discussions to support each others and stand together in the fight against AIDS. Discussions will be moderated by a team of moderators, and qualified physicians will also participate in the community for providing expert medical advice as a free service to the users. The application will also provide information about all the ongoing clinical trials, how to participate, and once the treatment is approved, it will provide information about the clinics and hospitals offering the treatment, and how to make appointments with legit clinicians that are officially collaborating with us.
Tokens will give early access for downloading the application before the official release. They will also give access to a series of privileged features in the app ecosystem such as a voting system for proposing new parameters (e.g., HLA patient subtype) for the database, or access to moderation roles in the social communities. The 1% of the revenues generated by in-app ads will go to community moderators as a compensation for their work.
We are developing this application specifically for our research, to overcome the limitations of current centralized databases. However, we believe there may be interest in using our application by other research organizations.
After all, this would be an application designed by a research scientist for research scientists. Our database will be open to any company or institution interested in using our app for storing their clinical data. Moreover, we will encourage them to do so as we believe that scientific data should be shared publicly.
. If you have a medical research background you may also be interested in taking a look at our whitepaper, as we also make an overview of the current state of our AIDS cure research. The key here is that we estimate our HIV treatment to be significantly cheaper than conventional antiretroviral therapy (ART) and substantially cheaper than any gene therapy product using modified autologous cells.