Your (or your loved one’s) medical records contain clues that can lead to new treatments.
AllStripes researchers learn from patient records what would truly improve quality of life.
Using cutting-edge tech we analyze your community’s data to improve trial design and chances of success.
Your community’s de-identified records can advance multiple treatment studies.
We do the work to collect all your records, at no cost, in your secure account. Access doctors’ notes you’ve never seen.
See how your rare disease journey compares to others with your condition, and what’s helping.
We’ll send you exclusive updates on the studies you’re contributing to and how you’re driving forward research.
Batten disease, also known as neuronal ceroid lipofuscinoses, is a group of progressive conditions impacting the nervous system. Batten disease is caused by mutations in several different genes that are important for the proper functioning of lysosomes. Lysosomes are the compartments in cells that break down molecules. When lysosomes don't work properly it leads to a buildup of toxic materials in the cells of the body. This causes the symptoms of Batten disease, which may include vision loss, seizures, abnormal movements, cognitive problems, and developmental regression. Most forms of Batten disease onset in children and result in significantly reduced life expectancy. There are also adult-onset forms which tend to have milder symptoms. There is no cure for Batten disease and only one subtype has an approved treatment.
The latest on our research: We are jumpstarting our Batten disease program to accelerate research on the condition and welcome all parents and caregivers interested in participating and spreading the word to the Batten disease community.
1. Sign up
Create your private account and review our research consent (takes about 10 minutes)
2. We get to work
We do all the behind-the-scenes work to retrieve and process your records
3. Impact research
Power multiple research projects at once by contributing your de-identified data
We believe that the only way to keep data accessible to the researchers who need it is by enabling patients to own and control their own data. Patients decide for themselves whether they want to privately and securely contribute to research, rather than having the decision made on their behalf.
We aim to make useful data accessible to all researchers who have legitimate research questions or research programs. For academic research, we offer access without charge. We take research ethics seriously, and we have policies in place to ensure that research is conducted with integrity.
We don’t like to take sides—we give all members of the community the option to get involved. Success in rare disease research takes a village and we always welcome additional collaborators who can advance and benefit from the mission.
Our primary mission is to accelerate drug development, so we prioritize generating insights specifically relevant to therapeutic research. We invest deeply in quality, security, and compliance to make this a reality.