patient registry – Patient Worthy

Photo courtesy of the Melanoma Research Alliance

Rare Community Profiles: Melanoma Research Alliance’s Marc Hurlbert Shares Milestone Achievement of RARE Registry for Acral and Mucosal Melanoma

Post author:Jessica Lynn
Post published:October 17, 2023
Post category:Melanoma

Rare Community Profiles Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,…

Photo courtesy of IndoUSRare

Global Registries Could Change the Lives of Hundreds of Millions of Rare Disease Patients Everywhere

Post author:Patient Worthy Contributor
Post published:August 22, 2023
Post category:Rare Disease

Authored by Dr. Harsha Rajasimha, Founder and Executive Chairman, IndoUSrare. Co-Authored by Dr. Padma Rammoorthy, Medical Consultant, IndoUSrare. The diagnostic journey for patients with rare diseases often becomes a prolonged odyssey,…

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Rare Community Profiles: PKD Foundation and IQVIA Partner to Create Next-Gen ADPKD Registry

Post author:Jessica Lynn
Post published:April 5, 2023
Post category:Autosomal Dominant Polycystic Kidney Disease

Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,…

source: shutterstock.com

Rare Community Profiles: Alira Health and the MGFA Partner to Develop a Myasthenia Gravis Registry

Post author:James Moore
Post published:March 22, 2023
Post category:Myasthenia Gravis Rare Community Profiles

Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…

International Gaucher Alliance and Cerner Launch Gaucher Disease Patient Registry

Post author:Kendall Mason
Post published:May 4, 2022
Post category:Gaucher Disease

Compiling data, especially rare disease data, can be extremely helpful for research purposes and for doctors treating patients with that condition. Recently, the International Gaucher Alliance and Cerner Enviza have teamed…

New Registry for CACNA1C-Related Disorders Created by The Timothy Syndrome Alliance

Post author:Trudy Horsting
Post published:April 13, 2022
Post category:Long QT Syndrome Timothy syndrome

The Timothy Syndrome Alliance (TSA) has just announced that they will be collaborating with Pulse Infoframe to create a patient registry. This registry will increase our understanding of the CACNA1C…

source: pixabay.com

VISION Registry Launched for Ocular Melanoma

Post author:Jessica Lynn
Post published:May 12, 2021
Post category:Ocular Melanoma

Patient-reported and patient-driven registries can be crucial in understanding rare diseases or cancers, driving research, and forming communities. Now, according to a recent press release, a new registry is forming,…

source: pixabay.com

GARDIAN Registry Launches for nGD Awareness

Post author:Jessica Lynn
Post published:April 16, 2021
Post category:Gaucher Disease Gaucher disease type 3

In mid-April, Kantar Health and the International Gaucher Alliance (IGA) shared the launch of a rare disease registry developed by the partnership. The registry, known as GARDIAN, will explore Gaucher…

source: pixabay.com

Patient-Powered ACCELERATE Registry Raises Castleman Disease Awareness

Post author:Jessica Lynn
Post published:February 4, 2021
Post category:Castleman Disease

Sometimes it can be difficult to study or learn about rare diseases, especially when there are not many patients. For example, only an estimated 30,000 Americans have Castleman disease. Yet…

source: pixabay.com

Those Affected by Lyme Disease Can Share Their Data Through Patient Registry

Post author:Kendall Mason
Post published:March 12, 2020
Post category:Lyme Disease

LymeDisease.org is one of the most distinguished nonprofits for Lyme disease in the United States. In 2015 they created MyLymeData in the effort to improve treatments for this disease. 10-20%…

What to Know About Coordination of Rare Diseases at Sanford

Post author:Patient Worthy Contributor
Post published:November 17, 2016
Post category:Rare Disease Timely

Patient Worthy™ had the unique opportunity to talk to the Coordination of Rare Diseases at Sanford, or CoRDS. Check out the interview below. 1) Can you tell us a little about…

Rare Community Profiles: Melanoma Research Alliance’s Marc Hurlbert Shares Milestone Achievement of RARE Registry for Acral and Mucosal Melanoma

Global Registries Could Change the Lives of Hundreds of Millions of Rare Disease Patients Everywhere

Rare Community Profiles: PKD Foundation and IQVIA Partner to Create Next-Gen ADPKD Registry

Rare Community Profiles: Alira Health and the MGFA Partner to Develop a Myasthenia Gravis Registry

International Gaucher Alliance and Cerner Launch Gaucher Disease Patient Registry

New Registry for CACNA1C-Related Disorders Created by The Timothy Syndrome Alliance

VISION Registry Launched for Ocular Melanoma

GARDIAN Registry Launches for nGD Awareness

Patient-Powered ACCELERATE Registry Raises Castleman Disease Awareness

Those Affected by Lyme Disease Can Share Their Data Through Patient Registry

What to Know About Coordination of Rare Diseases at Sanford

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