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

DRPLA n-of-1 clinical trial

Take a few minutes to read this announcement about an upcoming n-of-1 clinical trial for an individual with DRPLA based in the US.

Watch our 2023 DRPLA research update

Every year, we like to provide an update on our projects, offering you insight into what we are working on and what is on the horizon. Do not miss out! https://youtu.be/9R5UcB26_FU

Register for DRPLA Research Talk and Q&A, Nov 14

Event tailored for individuals with DRPLA, their families and anyone interested in DRPLA. Make sure to register in advance (it’s free!). Our Research Manager, Dr Silvia Prades, will be providing a comprehensive update on the projects funded by CureDRPLA. Followed by a...

The 2023 CureDRPLA Research Conference is taking place in Boston on October 10-11

We hosted the first-ever CureDRPLA Research Conference in May 2022, with participation from scientists, neurologists, and representatives from pharmaceutical and biotech companies. It was such a huge success that we decided to make it a yearly event and the time has...

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.

News

Insights from the International Drug Repurposing conference

Insights from the International Drug Repurposing conference

On March 6-7, 2024, the International Drug Repurposing conference took place in Barcelona, bringing together nearly 200 attendees. Among them was Dr. Silvia Prades, our Research Manager, representing our commitment to advancing research. Drug repurposing consists of...

read more
Rare Disease Day on February 29, 2024

Rare Disease Day on February 29, 2024

Rare Disease Day is a global movement to raise awareness about rare diseases and the challenges faced by those living with them. This day serves as a powerful reminder of the extraordinary resilience and spirit of the individuals worldwide living with a rare disease,...

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Social

3 weeks ago

Cure DRPLA
CureDRPLA was founded in November 2019 and since then we have funded more than $5M in research projects and activities aimed at advancing the organization’s mission. In light of our forthcoming 5-year founding anniversary, we are preparing an impact report to summarize our work and milestones. We want to include your voice—share how DRPLA has impacted you, what CureDRPLA means to you, your experience with our projects, and your hopes for the future.If you are interested in providing a testimonial or quote for this impact report, please contact us at info@curedrpla.org ... See MoreSee Less
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1 month ago

Cure DRPLA
The CureDRPLA Global Patient Registry currently holds data on 49 individuals with DRPLA. Our goal this year is to analyze this data to gain insights into DRPLA symptoms and progression. The findings will be shared with the scientific and patient community in an anonymized and aggregated form that will prevent identification of individual participants.If you have not registered yet, make sure you do so promptly to contribute to this research. Visit our website for more information curedrpla.org/en/global-patient-registry/ ... See MoreSee Less
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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.