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

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.

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. 

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...

read more
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...

read more
Interview about the DRPLA Natural History and Biomarkers Study

Interview about the DRPLA Natural History and Biomarkers Study

We interviewed Dr Hector Garcia-Moreno and Ola Volhin about the DRPLA Natural History and Biomarkers Study, watch the full interview here. This is a global study with sites in London, New York and North Carolina, all of which are currently recruiting participants. The...

read more

Social

7 hours ago

Cure DRPLA
Junko Shiozawa, our 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. Stay tuned for the interview and videos, coming soon! ... See MoreSee Less
View on Facebook

2 months ago

Cure DRPLA
We currently have two opportunities to take part in #drpla research to better understand this condition. Patient registry website curedrpla.org/en/global-patient-registry/ Video about patient registry bit.ly/what-is-a-registry Natural History and Biomarkers Study website bit.ly/NHBS-article Video about NHBS bit.ly/ytDRPLANHBS ... See MoreSee Less
View on Facebook

2 months ago

Cure DRPLA
Have you ever wondered in which countries there are individuals with DRPLA? If yes, this map 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!For a list of the countries and to find out more about the importance of this information, visit our website: bit.ly/map-DRPLAcases ... See MoreSee Less
View on Facebook

3 months ago

Cure DRPLA
Great news for the ataxia community! This is the first treatment ever approved for an ataxiaWe are delighted that the U.S. Food and Drug Administration has approved Reata Pharmaceuticals, Inc. Omaveloxolone for the treatment of adults with Friedreich’s ataxia (FA) in the US. This is a huge step for the entire community, and we are so pleased that people living with FA in the US will soon have access to this treatment. See the press release by heading over to our website with more information and answers to many questions including what this means for people outside the US.We were also pleased to hear that Reata submitted an application to the regulatory agency in Europe (the EMA) at the end of 2022, which includes Northern Ireland. For approval in Great Britain, Reata will have to apply to the MHRA. We will ensure the FA community in the UK is kept up-to-date with the latest developments. Sign up to our omav newsletter for updates by going to: www.ataxia.org.uk/omav-updates/ #ataxia #friedreichsataxia #ataxiaawareness ... See MoreSee Less
View on Facebook
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.