Individual differences color the narrative of health & disease.

Health Stories for deep phenotyping.

Pre-registration is now open. Share your story and join the conversation about precision medicine. We're developing a deep phenotyping program to redefine "health" and how we measure it. By learning directly from patients - we're all patients at some time - we can focus on research that will have an immediate impact. Share your story and help us learn what matters most to you.

Your story is unique.

Have you noticed that everyone responds differently to lifestyle, diet, exercise, sun exposure, etc.? Has your experience with a disease been unique and hard to predict? By helping us understand the ways your genetics, lifestyle, and the world around you interacts with your health you support the trail-blazing efforts of our advisors and collaborators around the globe.
 

Deep phenotyping personalizes health research.

Your unique lifestyle, surroundings, and genetics all influence how you experience health and disease, and even how you respond to treatments. By keeping track of your symptoms and lifestyle on a daily basis, you help us understand health on an unprecedented level of detail - a.k.a. "deep phenotyping". Your support helps discover patterns and insights that improve the way we diagnose, treat, and prevent diseases. Our goal is to develop a community of contributors, empowered by a personalized health management plan.

Learn More

Who should register?

Anyone!

Patients with undiagnosed or rare disease are also encouraged to participate in our rare disease registry – Raring to Go.
Please note that Health Stories and Raring to Go are separate programs. Your participation in both is welcome and appreciated.

What’s next after signing up?

Across all of IDG’s communities, we are dedicated to supporting our supporters – aka you.

For now, your Health Stories registration helps us understand the basic demographics of our community so we can build the first release of our deep phenotyping program. We’re not only building this program for research, but to develop tools that will have an immediate impact on the way you manage your health care.

Over the next year, members of the Health Stories community will receive news and invitations to partipate in program development.

Thanks in advance to our supporters – whether you’re here to support research for rare diseases or to better define your wellness routine, your participation expedites better healthcare for us all.

What is “deep phenotyping”?

Deep phenotyping is the study of the full range of possibilities for a trait. More than just a single measurement during a doctor’s visit or a yes/no answer to the question “do you have a particular disease or symptom?”, it is essential to understand the daily and weekly fluctuations in your symptoms and health, and how they respond to your lifestyle and environmental exposures.

What is a “trait” in medicine? A trait is anything that describes a particular aspect of a person’s health, such as a blood test or how the itchiness of a rash changes from day to day.

Who sees my information?

We take your privacy seriously and never share personally identifying information with our research partners, clinical support team, or sponsors. Our team’s collective history in patient support and medical research guarantees that these standards are upheld at every program level.

How will my information be used?

Your information guides program development. Because there are so many aspects of “health”, we want to address our community’s needs first. For example, if many Health Stories registrants have a fitness tracker and worry about the impact of exercise on their symptoms, we will know to design a program that works with the types of data they already collect through their tracker. Our goal is to streamline our deep phenotyping programs to fit easily into your lifestyle.

Keep on the lookout for news from Health Stories – your participation over the next year will contribute to the launch of our deep phenotyping program in 2019.

Check back soon - this page is growing!