Patient Registry

Sisters’ Hope Foundation wants to ensure all patients register and contribute to developments in treatments and a cure for ALSP.  Registries are critical to developing a treatment and cure for ALSP and testing those treatments in clinical trials. By enrolling in a patient registry, patients and family members can take action to help researchers learn more about ALSP.

Sisters' Hope Foundation is looking into the best options for our community. 

Patient Registry Frequently Asked Questions:

What is a Patient Registry?

Registries are observational research studies, usually limited to data collection and do not include procedures or interventions. A registry generally involves the collection of data from tests and measurements a medical provider orders as standard of care for monitoring a patient’s health. Registry studies may also be required by the FDA as part of post-approval requirements for a drug or medical device.

The two registries listed above collects and stores health-related information (data) about patients with ALSP from patients/families (not doctors). With your permission, your de-identified data may be shared with researchers and scientists to help accelerate the process to finding a treatment and one day the first survivor of ALSP.


Who can participate in a Patient Registry?

Any person diagnosed with the CSF1R gene mutation or their family member/legal guardian/caregiver.

How will the Patient Registry help patients/families?

Participation in a Patient Registry may…

  • Contribute to further research leading to the development of treatments
  • Provide patients the opportunity to participate in clinical trials
  • Help you learn more about the disease, leading to better advocacy in medical, education, and social services
  • Inform patients/families about the progression of the disease and how they may compare with other patients
What will be asked of patients participating in a Registry?

Sometimes, the first step is setting up an account, followed by answering a set of questions (survey) regarding the patient’s health history, and treatment. Over time additional surveys may be added and you will be notified of future surveys relevant to you.

How will data be kept confidential?

Your privacy is very important. Name and other personal identifiers will be removed from the data and replaced with a unique code number before data is shared with researchers. Data is encrypted (scrambled) when stored for added security.

Who owns the data?

Patients/family members who contribute their data to the Patient Registry own their data. You may withdraw from participating at any time.