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
News
What is it like to participate in a research study for DRPLA?
CureDRPLA is currently funding a Natural History and Biomarkers Study, aimed at gaining a deeper understanding of the progression of DRPLA over time, as well as identifying any genetic factors and markers that might predict disease progression. This study will provide...
DRPLA Researchers Spotlight – Dr Jeff Carroll’s group at UW
It is time we created a space for our funded researchers to shine and acknowledge publicly their tremendous contributions to the field. This will be an ongoing feature in which we will introduce all our funded researchers from around the world to our readers. The...
Building meaningful connections at the International Movement Disorders Congress
CureDRPLA was a proud exhibitor at the International Congress of Parkinson's Disease and Movement Disorders in Copenhagen, held from August 27-31. This event drew in a remarkable crowd of over 5,200 in-person attendees representing more than 100 countries. This...
Social
All About DRPLA - National Ataxia Foundation
www.ataxia.org
CENTRAL TIME ZONE This webinar will give an overview of the causes and symptoms of DRPLA, the typical diagnostic journey for those affected, and what to expect for clinical care. Read More...
For families facing DRPLA, UW research is helping illuminate a possible path forward
sop.washington.edu
Melissa Barker-Haliski’s work at the UW School of Pharmacy is exploring whether emerging gene therapy approaches for DRPLA could help reduce seizures and improve daily life for patients and...
All About DRPLA - National Ataxia Foundation
www.ataxia.org
CENTRAL TIME ZONE This webinar will give an overview of the causes and symptoms of DRPLA, the typical diagnostic journey for those affected, and what to expect for clinical care. Read More...
CureDRPLA Global Patient Registry
The CureDRPLA Global Patient Registry aims to collect data on up to as many DRPLA patients as possible. Participants will be asked to complete a set of questionnaires after enrollment with email requests for yearly updates. Data collected include participant demographic and contact information, details about diagnosis, functional mobility status, health economics, medical history, and activities of daily living.