Do you know a family impacted by a rare or chronic disorder? Are you a researcher (citizen scientist or professional) unable to move forward with potentially important experimentation because the tools you need are either unavailable (citizen scientist) or too expensive (professional)?  

Our desire is to enable the studies that have not been done, to create valid experiments that show not only what works, but also what does not. 

What is TREND

TREND is a community empowerment platform, designed to test hypotheses using crowd-sourced data.

Use TREND to track your diet, log medications or collect any data that is important to you with the TREND Form Builder. All of your data will remain private unless you choose to share it.

Participate in community-sponsored experiments or test your own hypothesis. Did you try B12 for the first time and experience a surge in energy? Do you want to test the hypothesis that B12 improves physical performance? Conduct a TREND experiment.

Not sure what questions you should ask? Don’t worry; we have experts who can help you with this.

Recruit a group of willing participants using TREND Community Builder and start collecting data. It’s that simple.

Once you have completed your experiment, share the results. Who knows? Your TREND experiment might change the world!

Who can use TREND

Any individual, non-profit, community hospital, university, organization or company can use TREND to capture, manage and share health data.  

For individuals, we like the potential for TREND to better understand nutrient combinations that can have a significant impact on the management of chronic disease.

For organizations & companies, the sky is the limit! You can capture, manage, and report an unlimited number of trials using a 21 CFR 11 compliant solution for a single, low-cost subscription.  

For associations & incubators, a TREND unlimited access subscription cost-effectively provides your clients access to our proven clinical trial tools.  

Our Story

Our daughter, Téa Marie, was born in October of 2012 following a very uneventful pregnancy. Naively, I imagined that her delivery would go according to the birth plan I had meticulously written and distributed to the day’s key participants. But nothing went according to plan that day.

After 17 hours of labor, Téa came into the world by way of emergency C-section. She had very low muscle tone and did not eat or cry. Later we would learn that she probably wasn’t strong enough for a natural birth.

We spent 10 emotional days in the NICU where they ran every test possible, including an MRI, X-ray, EEG, EKG and genetic tests. We waited anxiously as each of the tests came back negative. On the day we were discharged we received the heart breaking news that Téa has a rare genetic disorder called Prader-Willi Syndrome (PWS).

As soon as we learned they were running the genetic test for PWS we ran to the Internet. What we found was terrifying. Beginning in childhood, individuals with PWS develop an insatiable appetite, which leads to chronic overeating and obesity.

We read stories about individuals with PWS stealing food, eating food out of the trash and literally eating themselves to death. Families are forced to lock their refrigerators in order to keep their loved ones safe.

We took Téa home and spent a couple of days grieving. Then we took a deep breath and set out to rewrite her future. 

We did not know it at the time, but what we did next was the basis for TREND.

First, we found Dr. Jennifer Miller at the University of Florida. Dr. Miller is a leader in PWS research and care. She started Téa on growth hormone therapy and connected us with Melanie Silverman, an experienced nutritionist.

Dr. Miller explained that children who are on growth hormone therapy and follow carefully controlled, healthy diets are doing very well. They maintain healthy weights and have delayed onset of hunger. When they do enter the hunger phase, called hyperphagia, the hunger is less severe. Things were certainly looking brighter.

Next, I connected with an amazing group of “power moms” on Facebook. They were exploring therapies and diets, sharing their experiences and, together, solving small pieces of the PWS puzzle. They observed that certain foods, macronutrient ratios and supplements seem to increase mental clarity, improve energy and promote fullness. The data geek in me wanted to formally collect this information and take a closer look. How wonderful would it be if we could improve the quality of Téa’s life so dramatically through diet!

My husband and I own a web development company and we built a web-based clinical trial application in collaboration with the Wistar Institute. What if we could make these powerful  tools available for patients and caregivers to track and share their data? With the help of other members of the PWS community, we created TREND.

TREND, is designed to crowd-source data. It will enable us to evaluate the effectiveness of new and established therapies and share our findings with our doctors. Our intention is to partner with our doctors to make more informed decisions for Téa. We also hope to identify promising experimental treatments that can be moved swiftly to clinical trial. 

Here’s what we have so far

We built a secure, web-based platform to collect and store electronic data using highly configurable forms. These tools have been used in clinical trials and vetted by trained professionals. For more information visit us @ http://wi-design.com/trend/. 

We seek funding to conduct our first TREND experiments. We will recruit communities of parents to track their children’s diets and supplements and answer questions pertaining to quality of life. We will share this data with the medical and scientific communities to determine if further dietary restrictions should be considered in PWS.

Why we need FundRazr

We will use our FundRazr seed money to transform our existing platform into a community empowerment engine and run our first TREND experiments.

Our new, user-friendly tools will include: the TREND Experiment Wizard, TREND Community Builder, and What’s TRENDing announcement board.

The TREND Experiment Wizard will help users propose a hypothesis and design their data collection forms.

The TREND Community Builder will connect users with TREND experiments.

And, the What’s TRENDing Announcement Board will provide real-time updates on current and past TREND experiments.