Individual differences color the narrative of health & disease.
Join a movement for personalized healthcareRedefine clinical researchSpark treatment discovery
Each story adds to the bigger picture
Deep phenotyping personalizes health research.
When trends in health data look like this - and they often do - personalized context is needed to reveal meaningful patterns.
Consider cholesterol - it's agreed that high cholesterol can block bloodflow and cause serious health problems, yet some with "high" cholesterol live long, healthy lives. How does this unexpected outcome arise?
Health stories for deep phenotyping:
Health Stories is designed to answer the difficult questions that arise from deep phenotyping. Armed with a variety of data, and lots of it, we can uncover patterns that reveal new ways to treat rare disease as well as they provide insights for personalized medicine.
define your story
Who should register?
Patients with undiagnosed or rare disease are 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.
What’s a “trait” in medicine?
A trait is anything that describes a particular aspect of a person’s health, such as results from 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 guarantee these standards are upheld at every program level.
How will my information be used?
Your information focuses program development. Because there are so many ways to explore “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 know to design a program that works with the types of data they already collect through their tracker. Our goal is to streamline programs that fit easily into your lifestyle.
Keep on the lookout for news from Health Stories – your participation over the next year will launch our deep phenotyping program in 2019.