We recently held our very first Citizen Endo challenge! Citizen Endo challenges are short tracking tasks that help engage Phendo users in contributing to citizen science through Citizen Endo, a critical part of our participatory approach to understanding endometriosis. Challenges are an opportunity to get competitive and participate in the Citizen Endo community, and challenge participants help us collect data critical to understanding endometriosis.

Challenge #1 took place from July 24-July 30, 2017 and participants were tasked with tracking in Phendo every day for a week, answering as many questions that seemed relevant to them.

Take a look below for the results of our first challenge!

First lets take a look at participation.

Total number of participants signed up: 22

Total number of participants who tracked anything during the challenge period: 15

For all challenge participants (N=22), participants tracked for 4 days on average but most participants tracked for 5 days.

Number of days tracked for all challenge participants.

Of those who tracked anything during the challenge period (N=15), participants tracked for 5 days on average but most participants tracked for all 7 days. Way to go for those who were committed!

Number of days tracked for those who tracked anything.

Now lets see what was actually tracked.

During the challenge period, most people had good days(N=15). Yay!

Responses to “How was your day?”

Most common self-management strategies per participant (N=10) were breathing exercises, rest and stretching.

Responses to “What did you do to self-manage?”

Foods that participants ate to try to help their endometriosis symptoms (N=5) included vegetables. However, just as many participants said nothing helped their symptoms. Yet, almost as many participants said no foods hurt their symptoms. Foods that most participants avoided because they hurt their symptoms(N=6) included sugar and alcohol. Overall, more participants tracked foods to avoid than foods that might help their symptoms.

Responses to “What did you eat?”

Endometriosis can sure take a toll on daily life. Some activities of daily living that participants (N=12) had the most trouble with include getting out of bed and going to the bathroom.

Responses to “Which activities were hard to do?”

Exercises both helped (N=9) and hurt symptoms (N=7) for participants. Participants also reported that no exercises either helped or hurt them. The frequency of each reported exercise per participant is shown below.

Responses to “Did you exercise?”

Participants who reported their supplements (N=6) took mostly multivitamins and probiotics. The frequency of each reported supplement per participant is shown below.

Responses to “Take any supplements?”

Participants (N=13) reported pain in a wide range of areas, but mostly experienced pain in the abdomen, back, ovaries, and pelvis.

Responses to “Where is the pain?”

Participants (N=13) also described their pain in many different ways, but mostly experienced cramping and aching types of pain.

Responses to “Describe the pain”

Gastrointestinal and genitourinary (GI/GU) issues were commonly experienced by participants (N=11) and covered a wide range of symptoms.

Responses to “Any GI/Urine issues?”

Other symptoms beyond pain and GI/GU problems were also experienced among challenge participants (N=10) and these mainly included headache and fatigue.

Responses to “Experiencing something else?”

Participants also reported both their positive moods (N=4) and their negative moods (N=10). Overall, more people reported negative moods and mostly felt anxious. The frequency of each reported mood per participant is shown below.

Responses to “How is your mood?”

Looking at the most commonly reported medications and hormones, mapped to medication types, per participant (N=8), we can see that participants mostly took analgesics and opioids but a wide range of medications were reported.

Responses to “Take any medication?”. Drugs have been mapped to medications types.

Thanks again to all those who participated in the first Citizen Endo challenge! You can let us know if you have any questions or an idea for a future tracking challenge by emailing us .

You can also sign up to participate in Citizen Endo challenges by downloading Phendo and going to the Citizen tab in the Phendo app or by clicking here — just make sure to use the email you signed up for Phendo with!

Patients and data science for an endometriosis cure: We bridge the gap between patient experience and clinical characterization of endometriosis.

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