You can accelerate potential new treatments for PA

(Propionic acidemia)

By joining AllStripes, you can contribute to multiple PA research efforts without leaving home. The first is a HemoShear Therapeutics study to understand patients’ symptoms, treatment history and laboratory test results to help design the most robust clinical trials for a potential new oral therapy.

You can contribute your, or your child’s medical records. We do the work to collect and de-identify all records, which you can access at no cost in your secure account.

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

Who’s involved?

HemoShear Therapeutics

HemoShear Therapeutics

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 PA research

Propionic acidemia (PA) is a rare 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 heart, kidneys, pancreas, and brain. Patients can experience frequent 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 and fatigue. Some individuals with PA may also experience heart abnormalities and cardiorespiratory symptoms. PA 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 Propionic Acidemia program to accelerate research on the disorder to ultimately improve treatment options. We welcome all parents and caregivers interested in participating and spreading the word to the Propionic Acidemia community.

We currently have the following studies ongoing for PA:

  • Jumpstart
  • Accelerate
  • Insights

The PA 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.