A collaborative medical data platform to help rare disease research | Jone Ojinaga | TEDxMadrid

Translator: Tomás Salvador Maturana Baeza
Reviewer: Elisabeth Buffard Imagine that you go to the doctor,
because you feel sick and they take four years
to tell you what you have. And what you have is a strange disease that has no cure and the treatment
is purely palliative. Or they don’t have any. Well, this is how
7% of the world population feel. We are talking about 500 million people, that is 40 people among you
who are here today at TEDx. What is a rare disease? It’s a disease that affects
one person in 2,000, it doesn’t seem much,
but actually, in the world there are between 7,000
and 8,000 different rare diseases. It’s very difficult to track them, because there are only a few cases
and too many false diagnoses, so it generates
little information for research, making it difficult to deliver
a correct diagnosis. Besides the lack
of financial resources, one of the main problems of rare diseases research, it’s the access to the main source
of information, medical histories. There isn’t a standard format,
because our data are dispersed
in different medical centers, where we’ve previously been. For instance, think of when you move
to another location. And, because there aren’t many cases,
it’s hard to locate them and getting to that information
involves many bureaucratic obstacles. It’s a huge waste
of time and money. So, here is what we decided: what If we took the information
and then gave it to the researchers? if we facilitated access for them? Our proposal is datudato.org, an online platform where
mothers and fathers can collect, manage and share
the medical data of their children, from the very moment of birth. Why do we focus on children? two persons out of three
who have a rare disease are children, and because their mothers and fathers are real information gatherers
about their children, and even more when that information
involves health. What data we can upload? We can upload data about weight,
stature, cranial perimeter, radiographies, vaccination schedule, we can even upload data
about the fathers and mothers, because 80% of rare diseases
have a genetic origin. All the data
are stored and classified, and thanks to this, we can even
see the evolution of some cases. However, we can also share it
with any doctor in any consultation, regardless of the health system
we go to; also we don’t have to carry
all our personal data with us. The most important thing
is that all these files can be shared completely
anonymously, helping to create a global
data base accessible for information. We know that Datudato
can’t be an isolated solution. Without the effort of all the parties,
it’s impossible to achieve the goal which is to integrate
as many data as possible. It’s not just about us having our personal
clinical record with us at anytime and managing it ourselves, because, in the end,
the information is ours, it’s about sharing
for a common good; because we all are part of the solution,
and because the more data we share, the easier it is for future research. However, Datudato doesn’t stop here. The team is integrated by Íñigo, Guillermo,
Alicia, Jaime and me. We are still working
to make Datudato a real tool. And for that, we are looking for professional health advice, financial and technological support. So, if anyone wants to contact us, we are going to be here
for the rest of the day, and if not, you can email us
to [email protected] Thank you very much. (Applause)

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