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.
Methylmalonic acidemia (MMA) is a genetic condition where individuals cannot break down certain proteins and fats, leading to the build-up of harmful toxins that can cause damage to the kidneys, pancreas and brain. The symptoms of MMA typically begin very early in life and vary from mild to severe. Those with MMA can experience metabolic crises that cause vomiting, lethargy and dehydration, and may require hospitalization. Other common disease manifestations include developmental delay, intellectual disability, movement disorders, low muscle tone, poor feeding, fatigue and decreased kidney function. Chronic kidney disease may progress to the point of requiring dialysis or a kidney transplant. MMA requires lifelong management and in some cases, can be life-threatening. Current management is aimed at controlling the diet to reduce protein intake and prevention of metabolic crises caused by fasting, fever, infection, and injury. There is currently no cure.
The latest on our research: We are jumpstarting our MMA program to accelerate research on the disease to ultimately improve treatment options. We welcome all parents and caregivers interested in participating and spreading the word to the MMA community.
We currently have the following studies ongoing for MMA:
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.