18 posts from December, 2015

A Q&A with Alec Mian, CEO of Curelator

Posted December 23rd, 2015 by

Our partners at Curelator Headache enable individuals with migraine to discover their personal triggers, dismiss supposed triggers that are not associated with attacks, and identify factors that reduce the risk of having an attack (“protectors”). Understanding your personal triggers – environmental, physical, or emotional – and how they may be acting in combination to provoke attacks is the first step to taking back control and managing your migraines. Read our Q&A with Curelator CEO, Alec Mian, below.

Q: Alec, you have a background in the biopharmaceutical industry. Can you tell us a little bit about yourself and what drew you to Curelator?

I last worked for a biotech startup called Genmedica Therapeutics in Barcelona, Spain. Genmedica was one of the first companies that targeted the cause of diabetes; one of the major causes is depletion of the insulin-producing beta-cells in the pancreas. In animal testing the Genmedica drugs had some of the best results any of us ever saw. These drugs are now in phase 2 clinical trials in humans. But the truth is – for people with early type 2 diabetes, the disease is actually reversible through dietary changes and exercise – unfortunately only a small percentage of the population actually invoke those changes and avoid pills altogether.

Q: Can you tell us where the concept of Curelator came from?

My goal was to create a Company whose mission is to confer long-term benefits for people with chronic conditions, such as migraine, through a non-pharmaceutical approach.

Curelator was the offspring of two needs. The first need is for a non-pharmaceutical approach that can identify all the factors – habits, environment and diet –  that may influence a migraine attack.

The second need is for a fully individualized technology, one that identifies each individual’s personal factors – not the factors that might be common in a population and irrelevant to the individual. Curelator acknowledges that everybody is different.

Q: Can you explain Visual Migraine Language (VML) and the Individual Trigger and Protector Maps?

Curelator requires each individual to self-report and track their exposure to about 60 factors everyday using a smartphone. We’ve made this an easy 2-3 minute exercise by developing a Visual Migraine Language. It is a fun series of icons representing factors that users can quickly learn and facilitates rapid, game-like data entry.

After 45-90 days of data entry Curelator users generate three highly individualized map:

  • The Protector Map will display all the factors associated with decreased risk of attack.
  • The Trigger Map shows factors associated with increased risk of attack.
  • The No-Association Map lists all the factors that have nothing to do with an individual’s migraines. This is actually quite important since many migraineurs walk around needlessly avoiding a catalogue of things for no good scientific reason.

People usually know a couple of their factors, are surprised by others that they did not suspect and inevitably, they also realize they were avoiding things they had no need to avoid.

Q: How can Curelator help people living with migraines? What does Curelator do with the data submitted by migraine patients? (i.e. research, etc.).

The maps equip our users with the knowledge they need to start changing starting their dietary habits and other behaviors. Early results show that people seem to be reporting a 30-40% decrease in attacks and days with migraines after 3-9 months of use – which is fantastic.

You can view some of our results (generated in collaborative studies with National Headache Foundation and Migraine Trust) in an unusual visualization we call a Population Trigger Map:
https://curelator.com/migraine-trust-population-trigger-map/
https://curelator.com/nhf-population-trigger-map/

Q: Are there any success stories you’d like to share, from either the neurologist or patient perspective?

Many patients thank us for discovering simple things, learning that they can actually eat chocolate or drink red wine again –  before getting their maps they were absolutely convinced that they couldn’t.

We have a very interesting case study with a well-known migraine advocate who is active in our PatientsLikeMe forum and is also a registered nurse, Sharron Murray. She was one of our first testers and Curelator successfully confirmed what she had previously found to influence her attacks – but in three months, not five years. We recently interviewed Sharron and she has also has a very popular migraine site.

Q: What advice would you give to people living with migraine? What do you wish more people knew about migraine?

Anyone with migraine should see a good doctor – preferably a neurologist. We have a free coupon referral program with many neurologists so migraineurs can try out Curelator for free and their data will be part of a large research study we are conducting. They just need to ask their doctor for it.

In terms of educating migraineurs, there is a lot of false information about migraine on the Internet. Please don’t assume that there is such a thing as “common triggers.” This condition affects people quite differently.

Q: We’re very excited to be partnering with you. How do you think those using Curelator will benefit from an online community and health-tracking site like PatientsLikeMe? How can PatientsLikeMe migraine members benefit from Curelator?

PatientsLikeMe is an incredibly valuable place to share the experience of your journey, your trials and errors and to learn from others. But shared information is best if it is scientifically based. Otherwise you’ll lose time and be frustrated chasing red herrings. If you have scientifically generated information about your condition, you have the basis for real progress in terms of managing true triggers and embracing true protectors – and getting back control.

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Your data doing good: Our collaboration with the FDA

Posted December 21st, 2015 by

During #24DaysofGiving this December, we’ve been highlighting all the good your health data is doing. For this one, we wanted to share more about how the data you donate is the centerpiece of a new collaboration between PatientsLikeMe and the Food and Drug Administration (FDA).

Even after a new medication or treatment makes it through the rigorous clinical trial and FDA approval process, we still have a lot to learn about its impact in the real world. Clinical trials are considered the ‘gold standard’ of medical research, but they usually only account for a small fraction of the population that will eventually be prescribed that new treatment.

Today, the FDA reviews large claims data and uses a spontaneous reporting system of individual case safety reports to find out how a product is doing once it’s approved and in the market. If you think that sounds complicated and not very clear, you’re not alone. Basically, the FDA is waiting for a safety signal, dramatic event or adverse event (all fancy words for side effect) to happen that drug manufacturers are required to report. The problem is if you – the patient – or your doctor doesn’t submit a report about your experience to the drug manufacturer, then the drug manufacturer can’t report it to the FDA.

That’s why PatientsLikeMe and the FDA decided to collaborate this year. We wanted to see if patient-reported data from PatientsLikeMe could help the FDA identify new information about approved treatments when they are used outside of clinical trials. Since you generate the data, it provides important real-time insights into your experience over time, including drug tolerance, adherence and quality of life. In short, we’ll be learning if the aggregated real-world, longitudinal data you report can help the FDA better assess and manage risks.

But this isn’t entirely new to us here at PatientsLikeMe. We’ve actually been tracking the treatment effects you share about since 2008. In all, and thanks to your reporting, we’ve collected more than 110,000 side effect reports on 1,000 different medications. That’s information the FDA will now be able to study and analyze in addition to more traditional sources.

Now you know what’s behind our friendly emails and reminders when we ask you to update your treatments or complete a treatment evaluation during #24DaysofGiving. Everything you donate is going to help a whole lot of people!

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