CureDRPLA Global Patient Registry is available!

What is DRPLA?

Dentatorubral-pallidoluysian atrophy, commonly known as DRPLA, is a progressive brain disorder that causes involuntary movements, emotional problems, and a decline in thinking ability. The average age of onset of DRPLA is 30 years, but this condition can appear anytime from infancy to mid-adulthood.

What is CureDRPLA?

CureDRPLA is a US based non-profit founded by Paul and Andrea Compton. Paul and Andrea have a son that was diagnosed with DRPLA in August 2018. The mission of CureDRPLA is to connect families, physicians and scientific investigators to further DRPLA research and work towards a treatment for DRPLA. This webpage was created to find others that have this condition and are interested in finding a cure.

CureDRPLA
Global
Patient
Registry

The CureDRPLA Global Patient Registry is a worldwide registry of DRPLA patients.

This registry gathers the demographic and clinical information on DRPLA patients from across the globe.  By collecting information on all DRPLA patients, the CureDRPLA Global Patient Registry will be a powerful resource for research and will enhance opportunities for treatment development.

Patient & Caregiver

Click below to find out what CureDRPLA has done and what we are currently doing to find to a treatment for DRPLA.  You will also find online resources and support organizations for DRPLA as well as YouTube channels specifically focused on DRPLA.

Click below to find out what CureDRPLA has done and what we are currently doing to find a treatment for DRPLA.  You will also find online resources and support organizations for DRPLA as well as YouTube channels specifically focused on DRPLA.

Patient &
Caregiver

Researcher
& Industry

CureDRPLA is investing in a number of projects in hopes of rapidly developing novel therapeutics for DRPLA.  Information on funding opportunities, a list of our preclinical projects as well as other efforts can be found here.

Latest

DRPLA Natural History and Biomarkers Study: the London site is now recruiting!

Prof. Paola Giunti at University College London is recruiting participants for this study.

CureDRPLA advocates are going to the International Congress for Ataxia Research in Dallas, November 1-4

Andrea Compton, Silvia Prades and Julie Greenfield are going in person to learn about the latest research and network with researchers and industry representatives

DRPLA Natural History and Biomarkers Study: the New York site is recruiting!

Dr. Claire Miller at New York University Langone Health is recruiting participants for this study. Please read this flyer for more information.

The CureDRPLA Global Patient Registry is now listed on the ClinicalTrials.gov website!

This will be great to spread awareness across the world. You can find our study here.

CureDRPLA funded research

Since November 2019 we have funded $3.3 millions in DRPLA research. Our main goal is to find a treatment for this condition.

DRPLA Natural History and Biomarkers Study: the North Carolina site is recruiting!

The North Carolina site has started recruitment and you can find the study flyer here. 

2022 CureDRPLA Research Conference 

CureDRPLA hosted the first-ever DRPLA Research Conference in Boston on May 11, 2022!

CureDRPLA’s team meets in person for the first time

Last week CureDRPLA’s team met for the first time after +2 years of working together remotely!!! We met for the 2022 CureDRPLA Research Conference in Boston (USA), which was a huge success! An article summarising the conference and the main takeaways will be published...

We are improving our website

We are launching three new sections on our website: News, Events and Announcements!

News

A report from Junko Shiozawa’s trip to Japan

A report from Junko Shiozawa’s trip to Japan

Junko Shiozawa is our Advisory Board Member and her daughter has DRPLA. In May, Junko went to Japan to recruit more participants for the CureDRPLA Global Patient Registry. Although DRPLA is more common in Japan, we only have 7 Japanese participants in our patient...

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Outcomes from the 2022 CureDRPLA Research Conference

Outcomes from the 2022 CureDRPLA Research Conference

The main goal of CureDRPLA is to advance DRPLA research and work towards a treatment for this condition, and this is what the conference was about! We had a few presentations showcasing the research that has taken place since we started this journey in 2019. All...

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2022 CureDRPLA Research Conference Participants

2022 CureDRPLA Research Conference Participants

CureDRPLA hosted the first-ever DRPLA Research Conference in Boston on May 11, 2022! 24 people attended and 7 more were on Zoom.  Participants included: Scientists and medical professionals from Western Washington University (USA), New York University (USA), Boston...

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join drpla

Join Our DRPLA Community Today

At CureDRPLA, we connect patients, families, clinicians and researchers to further DRPLA research and work towards a treatment for DRPLA. You can join our community by going to Rare Connect. For more information about our community, get in touch with us.