You can accelerate drug development in achondroplasia

(achondroplasia)

Your experience with achondroplasia is important and can help researchers advance treatments for your community.

By joining AllStripes, you can contribute your de-identified medical records to multiple research efforts for achondroplasia without leaving home. We do the work to collect your information, and you’ll receive all your records in your secure account, at no cost.

Help this community hit the research goal by sharing with your network!

Who’s involved?

The Chandler Project

The Chandler Project

How sharing your journey powers progress

  • Jumpstart new research for your rare disease

    Your (or your loved one’s) medical records contain clues that can lead to new treatments.

  • Determine important symptoms to target

    AllStripes researchers learn from patient records what would truly improve quality of life.

  • Speed up development of treatments

    Using cutting-edge tech we analyze your community’s data to improve trial design and chances of success.

  • Be part of multiple research efforts, without leaving home

    Your community’s de-identified records can advance multiple treatment studies.

BENEFITS TO JOINING

What you’ll get along the way

We do the work to collect all your records, at no cost, in your secure account. Access doctors’ notes you’ve never seen.

Access your records

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.

Learn from your community

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.

Track your impact

We’ll send you exclusive updates on the studies you’re contributing to and how you’re driving forward research.

Join now

Our work with achondroplasia research

Achondroplasia is a type of dwarfism, which is part of a larger category of conditions called skeletal dysplasias, or disorders of bone and cartilage development. Achondroplasia is caused by pathogenic variants in the FGFR3 gene. Two specific variants in FGFR3 cause almost all cases. All individuals with achondroplasia have short stature, usually with an average-sized trunk and short arms and legs and limited range of motion at the elbows. Other signs and symptoms include an enlarged head, episodes in which breathing slows or stops for brief periods (apnea), obesity, and recurrent ear infections. Affected individuals usually develop a sway of the lower back (lordosis) and bowed legs in childhood and may also develop abnormal forward rounding of the back (kyphosis) and back pain.

Rare but potentially serious complications of achondroplasia include spinal stenosis, a narrowing of the spinal canal that can compress the spinal cord and cause pain, tingling, and difficulty walking; and hydrocephalus, which is a buildup of fluid in the brain that can cause increased head size and brain abnormalities. Treatments can help to alleviate symptoms and some patients elect to utilize growth hormone or undergo surgery to increase height. No cure exists for achondroplasia.

The latest on our research: We are jumpstarting our achondroplasia program to accelerate research on the disorder to ultimately improve treatment options. We welcome all patients and caregivers interested in participating and spreading the word to the achondroplasia community.

  • Jumpstart
  • Accelerate
  • Insights

The achondroplasia program is in the jumpstart stage.

How it works

Sign up

1. Sign up

Create your private account and review our research consent (takes about 10 minutes)

We get to work

2. We get to work

We do all the behind-the-scenes work to retrieve and process your records

Impact research

3. Impact research

Power multiple research projects at once by contributing your de-identified data

Still have questions?

Check out our FAQs

Our values & principles.

1
Patients own their 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.

2
We protect patient privacy

We abide by a strict research consent and privacy policy. We only share de-identified data with researchers, foundations, and therapeutic companies with patients’ consent. Protecting the privacy of patients and ensuring the security of their information is our highest priority.

3
Researchers gain access

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.

4
Inclusiveness in the community

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.

5
Driving forward therapeutic development

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.