Rare-X

Written By Heather Margrill

https://rare-x.org/rnu4-2


RNU4-2-related disorders patients, families, and communities are excited to participate in data collection to expand and improve medical research. We are asking ReNU families worldwide to help build that foundation by creating your CRID then joining Rare-X.

  • Request to join: https://dcp2x.rare-x.org/#/user-request

  • 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. 

    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

  • Virtual. No clinic visits required.

  • 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 a data sharer to help advance research and accelerate treatments.

  • 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.   

    To participate in Rare-X, the ReNU family member creating the account must:

    • Be at least 18 years of age in the US, or the Age of Majority within your state/country

    • Register as either a Patient Participant, a Caregiver Participant that is a parent or legally authorized representative of the patient, of as a Person who has lost a loved one

  • There is no cost to you.

  • https://globalgenes.org/contact-us/

  • Frequently Asked Questions are posted on the bottom of this page:

    https://rare-x.org/rnu4-2/

Heather Margrill
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