FAM177A - Data Collection Program

FAM177A1 Disorders patients, families, and communities are excited to participate in data collection to expand and improve medical research. By coming to this site, you can begin the first step in making your patient information available to researchers. By generating the most comprehensive FAM177A1 Data Collection Program, we can accelerate research and the development of new drugs, devices, or other therapies. Only you hold the key to unlock future discoveries.

Start Your Journey

Already Enrolled?

How it works:

  • No clinic visits required, and there is no cost to you
  • Patients and Caregivers retain full control over who has access to  patients’ health information
  • With your consent, clinicians (doctors), researchers, and drug development companies (biopharma) can access de-identified data to aid research
  • Enrolling into the Data Collection Program requires minimal time, and you can come back to the site at your convenience to update your information
  • The best web browsers to use for the Data Collection Program are Google Chrome, Apple Safari, or Mozilla Firefox. Do not use Microsoft Edge or Internet Explorer

Why Should You Participate?

The surveys you will take in the Data Collection Program are critical to the drug and treatment development process. Our goal is to make the process as easy as possible for you. The Data Collection Program uses a collaborative technology platform powered by RARE-X. RARE-X is a program of Global Genes created to accelerate rare disease research, treatments, and cures by removing barriers for data collection and sharing. By participating, you are…

  • Informing researchers how a disease or condition changes over time
  • Enabling better data to use in clinical trials
  • Reducing the time it takes to study new medicines in clinical trials
  • Speeding up the time to get therapeutics to patients
  • Enabling the use of data as a placebo (instead of actual patients) in a clinical trial

Become an data sharer to help advance research and accelerate treatments. Please join us.

Participating Organizations

Getting Started


Log in to the Data Collection Program
Complete the Request Form 


Request a validation code.



Confirm your email address by entering the validation code and create your password.


Login to the DCP. 
Come back to update the patient’s profile if new information is available or if the patient’s information or medical condition changes. 

Start Your Journey

Already Enrolled?

Frequently Asked Questions

The Data Collection Program (DCP) collects and stores health-related information (data) about patients with rare diseases/disorders. With your permission, your de-identified data will be shared with researchers and patient organizations associated with this disease world-wide. 

Any person diagnosed with a rare diseases/disorders or their family member/legal guardian. Even if a patient has passed away, their data still has tremendous value to researchers and may help future patients.   

Participation in this DCP 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

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 will be added and you will be notified of future surveys relevant to you.

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.

The data is securely stored on the RARE-X data platform and made available to researchers and patient organizations.

Patients/family members who contribute their data to the Data Collection Program own and manage their data, including who has access to it and how it’s shared. 

You will be able to choose to share de-identified data with specific types of researchers (ie. all researchers, just biomedical researchers, researchers from Biopharma, etc.)

You may choose to share identified data (name and email) with patient organizations so they may connect with you. 

There is no set time limit on how long this Program will store data for future research.


It is your choice if you would like to be contacted for possible clinical trials. 

You can always leave and return to complete surveys later.

Yes, patients can stop taking part in this Program at any time for any reason. 

This program is a GLOBAL data collection program. Over time additional translations will be rolled out.  

The best web browsers to use for the Data Collection Program are Google Chrome or Apple Safari. Do not use Microsoft Edge or Internet Explorer.

If you have questions about this Program or consent please contact the research staff by sending an email to rarexsupport@globalgenes.org

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