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.
Charcot Marie Tooth Disease Type 4J (CMT4J) is an inherited neuropathy affecting the peripheral nervous system. CMT4J is a rare subtype of Charcot Marie Tooth disease involving genetic mutations in the FIG4 gene. People with CMT4J can experience a broad range of symptoms, from fairly mild to severe. Typically, CMT4J causes progressive muscle weakness in the limbs, sometimes leading to wheelchair dependency and paralysis. Scoliosis is also common. Sensory involvement can occur, including numbness, tingling, or pain. CMT4J can sometimes weaken muscles involved with breathing, leading to chronic respiratory failure and the need for mechanical respiratory supports. Symptoms of CMT4J can begin at nearly any age. Early onset disease can begin in infancy/toddlerhood, showing up as delayed motor milestones, delayed walking, or a halting gait. Later onset disease can occur in adolescence or adulthood. Disease progression is also highly variable.
CMT4J is often misdiagnosed as CIDP (chronic inflammatory demyelinating polyneuropathy). Genetic testing can confirm diagnosis.
Management of CMT4J is based on supportive care, as currently there are no approved treatments. Research in gene therapy and other treatments is ongoing.
The latest on our research: We are jumpstarting our CMT4J program to accelerate research on the disorder and welcome all parents and caregivers interested in participating and spreading the word to the CMT4J 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.