DTRF Patient Registry
We are pleased to announce the launch of The DTRF Patient Registry, a collaborative effort between the Desmoid Tumor Research Foundation (DTRF) and the National Organization for Rare Disorders (NORD) to study desmoid tumors. The DTRF was selected by NORD to create The DTRF Patient Registry as part of a cooperative project between NORD and the U.S. Food and Drug Administration (FDA) that supports research on rare diseases and how they progress over time – natural history studies.
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What is a patient registry?
A patient registry is an online data system that systematically collects, stores, and retrieves patient data for analysis in research studies. The DTRF Patient Registry serves to:
- Provide a convenient online platform for patients or their legally authorized representative to report cases of desmoid tumors.
- Conduct a prospectively-planned natural history study that will result in the most comprehensive understanding of desmoid tumors and their progression over time.
- Characterize and describe the desmoid tumor patient population as a whole.
- Assist the medical community with the development of recommendations for standards of care.
- Assist researchers studying the pathophysiology of desmoid tumors.
- Support the design of clinical trials that explore new desmoid tumor treatments.
Overview of DTRF Patient Registry
The DTRF Patient Registry is more than a versatile online system that securely collects and stores data for medical research; it is a dynamic participant-driven resource that can empower and unite the desmoid tumor community through shared knowledge. Registry participants not only can complete surveys about their own disease experiences, but also can learn about other participants’ experiences by viewing aggregated survey data. Participation in the DTRF Patient Registry is free and voluntary, and participants may withdraw at any time.
What types of data will be collected in the DTRF Patient Registry? Is the data secure?
The DTRF Patient Registry collects data on the following topics:
- Medical and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
The DTRF Patient Registry is a powerful opportunity for individuals with desmoid tumors and their family members to contribute directly to research that will enhance our understanding of desmoid tumors, thus facilitating the development of new diagnostic and treatment options. Participation is especially vital given the rarity of desmoid tumors – every patient experience is a unique and invaluable part of the natural history of desmoid tumors.
Visit the DTRF Registry to learn more and create an account.
Learn how to create an account by accessing our Registration Instructions
What data has been gleaned through the DTRF Patient Registry and its Natural History Study?
What trends have we seen emerge so far?
How can YOU contribute to this study?
This summer, the DTRF hosted a webinar about the DTRF Patient Registry called “The DTRF Patient Registry: Why It’s Important & How To Use It”.
Registry curator Kelly Mercier, PhD, and Registry administrator Lynne Hernandez walk you through what we have learned so far since the registry launched in 2017. Kelly and Lynne also talk about how to navigate the portal, along with the registration process, consent and other important questions.
If you haven’t joined the registry yet, this webinar is a great place to start learning about it!
Watch our one hour webinar below.