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Jane Fam,
A belated Happy May from the NextGen Jane team! Since the close of our funding, we’ve been busy moving labs, making new hires and preparing for the launch of several research trials. We have over 1000 people signed up to be Beta Testers, and the number is growing everyday. Thank you for actively engaging with our community! More than half of you that are signed up have filled out our brief and anonymous demographic roll call, which helps us better understand who you are and where you hail from. California is in the house!

This month we want to share this data with you, in aggregate. Selfishly I get excited every time someone signs up to be a Beta Tester. I constantly check the demographic data we collect to see if there is someone whose unique biological footprint fills in a glaring gap in our data. But mostly I approach this data as an eager student, learning how we are infinitely more complex than broad labels like "Black", or "White". We intentionally provided space in our questionnaire for people to express how they characterize themselves. And in doing so, we had an opportunity to learn how each of you view yourselves, instead of how others might view or categorize you. It’s cool for us to get to know you beyond an email list serve.

We see the representation of this community popping up on so many different axes — age, ethnicity, diet, and more. It’s a good opportunity to take stock and see if there are gaps where you can help us recruit to make the data more diverse. And it allows us to tease out the types of analyses we’ll able to do once we have a bigger number ("n") of participants and more quantifiable data (i.e. your tampons!). 

So let’s get started.
The current respondents to our survey align near perfectly with a menstruator’s journey from menarche to menopause (from 14 to 52 years old, ). Our most robust age bracket is from 25 to 34. That means many of you had coming-of-age moments to N’Sync, picking up the closest thing that resembled a microphone and rage-singing "It's tearin' up my heart when I'm with you" with full teenage abandon. (Yes, you can definitely rage-sing N'Sync.) And you were there for the release of "The College Dropout," back when Kanye was “Good Kanye".

In the late 90s, I had just started college, and I was trying to figure out how to balance unfettered access to junk food with the stress of an engineering curriculum in the Freshmen “weed out” year. I remember scarfing down multiple grilled cheese sandwiches with chocolate milk for dinner. I’ve been waiting for the delayed onset effects of that college diet for about 2 decades now. Pray for me, friends.
Stephen and I talked at length about how to capture ancestry / ethnicity for our research. Growing up, I remember the Iowa Test of Basic Skills offering a few gross categories which forced you to squeeze into “White”, “Black”, “Hispanic”, “Asian” or “American Indian” (the actual choice from the test, not my taxonomy). The very first time I took the test, I didn’t know whether to select Asian or American Indian. I was confused by the nomenclature. I was more concerned, at the time, of selecting the wrong answer rather than considering the limitations of  the broad stroke racial categories offered to me.
As I have spoken about before, your ethnic background matters when it comes to the types of conditions you are at high risk for. For example, women of Ashkenazi Jewish ancestry are more likely to have genetic mutations for breast and ovarian cancer. African Americans are more likely to have sickle cell anemia. People of Italian and Greek ancestry are at higher risk for beta-thalassemia, a life threatening blood disorder. Cystic fibrosis is most common in Caucasians of Northern European descent.

Ideally, we want to understand your ancestral makeup at this granular level. Shoutout to all the people referencing 23andme and ancenstry.com in their answers. It is fascinating to see the complex backgrounds you have. If you blow up the nondescript category of “Other”, you’ll see how unhelpful big, boxy super categories are in capturing our complexity. 
Part of why we are so excited about the Beta Test is that we will finally establish the parameters for a “normal” menstrual cycle. This benchmark can then be used to understand if your cycle is heavy, long, or painful, and whether it is causing anemia. We know there are natural and mundane things that can influence your period. Many women experience a lightening of their flow as they get older – so age makes a difference. There are certain medications for depression that can actually make your period heavier or lighter. And women of certain ethnic backgrounds just bleed heavier than others. We get it — a “normal” cycle depends on many key factors, and defining a normal cycle should ideally be established by taking these factors into consideration. A 16-year old Caucasian menstruator will likely have a different normal cycle than a 38-year old South Asian AND a 45-year old African American. So now let’s examine the data through that lens. 
What jumps out at you?

I immediately noticed that there is good representation across many age groups for Caucasian women. But take a look at the South Asian cohort. That one orange blip in the 36 to 40 range – that’s ME! If I were to try and use that data to understand whether I was normal right now, I would literally be comparing myself to myself.

Brown Sisters, help me out here! Our analysis is only as relevant and appropriate as the robustness and strength of the people signed up in these categories. 
We’re interested in understanding the evolving perspective of our base. You are the pulse of a larger community, and your day-to-day behavior is shaping how we can care for your health  — take birth control for example. Would age make a difference in what contraception someone used? So far, it seems like the most popular option is to not use any sort of hormonal intervention, across all age groups. This could be due to changing attitudes toward sex, distrust in our medical system, or responses to new digital technologies to track your period and fertility window.

Does that surprise you? We didn’t have enough data to parse this by ethnicity or geography in a meaningful way, but I am so excited to hit an "n" of 10,000 and look again. 
Finally, big ups to all you vegetarians out there. Whether you are doing it for better health or to reduce your carbon footprint, you are winning. The 9 of you on keto, I see you. That’s a diet we are watching for clear, clinical data showing its efficacy as a health intervention for diseases like endometriosis and PCOS. For my sweet-toothed brethren — I’m right there with you. With summer imminent, I hope to see you at the ice cream shoppe where you will find me reliably on the weekend. 
If you are already signed up to be a Beta Tester but haven’t filled out the Demographic Roll Call – what are you waiting for! Link here.

Yours,
Ridhi
Copyright © 2019 NextGen Jane, All rights reserved.


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