CureDRPLA Global Patient Registry is available!

What is DRPLA?

Dentatorubral-pallidoluysian atrophy, commonly known as DRPLA, is a progressive brain disorder that affects coordination, balance, speech, and 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 adulthood. The symptoms and progression vary depending on the age of onset.

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

Sign up for CureDRPLA newsletter

Be among the first to know and become part of our community. Sign up here.

Rareconnect closing down

Rareconnect will retire on 1st December 2023 and we won't be able to post on the DRPLA community anymore. You can continue getting updates on the following sites:DRPLA Facebook group - https://www.facebook.com/groups/144167217964CureDRPLA Facebook page...

New interview alert!

Junko Shiozawa, Advisory Board Member, visited Europe and met with Julie Greenfield, Head of Research at Ataxia UK, to talk about ataxia research and the latest news in DRPLA.

Are your healthcare professionals knowledgeable about DRPLA?

From your experiences when dealing with healthcare professionals: What information would be helpful to have out there?Are your healthcare providers familiar with CureDRPLA?Would it be helpful to have a flyer about DRPLA in lay language?What information would be...

Share our new CureDRPLA pamphlet to raise awareness of DRPLA

You can find it here. Send it to friends, family, caregivers and medical professionals!

We are presenting a poster at ICAR about the CureDRPLA Global Patient Registry

Silvia will present a poster with data collected from the 33 participants. It will address questions like ‘What is the average age of onset?’ ‘What are the most bothersome symptoms?’ ‘How many patients experience epilepsy?’ and many more.

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.

News

In which countries can we find people with DRPLA?

In which countries can we find people with DRPLA?

If you ever asked yourself this, the map we have created will come in handy. We coloured in orange those countries in which at least one person with DRPLA has been identified – 35 countries in total! We have gathered this information from scientific articles and...

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Successful meet up in Cardiff with DRPLA families

Successful meet up in Cardiff with DRPLA families

On February 22nd, I organised a meet up for families affected by DRPLA who are based in Wales. I travelled to Cardiff with Dr Hector Garcia-Moreno and Ola Volhin, who work at University College London on the DRPLA Natural History and Biomarkers Study. We met with...

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Social

1 month ago

Cure DRPLA
CureDRPLA is at the International Congress of Parkinson's Disease and Movement Disorders in Copenhagen 🌍👥 This colossal conference, hosting more than 5,100 in-person attendees, presents an ideal platform to raise awareness about #drpla and showcase our work. At the booth we are engaging medical professionals, along with delegates from the pharmaceutical and biotech sectors. ... See MoreSee Less
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1 month ago

Cure DRPLA
Introducing the CureDRPLA Newsletter!📨 Stay connected with us and informed about our progress.🔍 Dive into our updates every 6-8 weeks.🔬 Discover our groundbreaking research projects.📣 Stay up-to-date with news important to the DRPLA community.Be among the first to know! Sign up now and become part of our community: curedrpla.org/en/newsletter/ #curedrpla #drpla #drplaresearch ... See MoreSee Less
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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.