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Introducing the VCP Family Registry

  • Writer: Cure VCP Disease, Inc.
    Cure VCP Disease, Inc.
  • Sep 17
  • 3 min read

Updated: Sep 18


Cure VCP Disease, in partnership with COMBINEDBrain, Across Healthcare and their Matrix registry platform, is launching a new VCP family registry.


WHY A NEW REGISTRY?

The new VCP Family Registry enhances our ability to support cutting-edge VCP research and attract vital industry partnerships needed to advance treatments for those affected by VCP disease. This upgraded platform provides better tools for collecting and sharing critical patient data with researchers worldwide.


ABOUT THE NEW REGISTRY

The VCP Family Registry is a comprehensive platform that collects the lived experiences of patients, caregivers, and family members affected by VCP disease. This valuable information is shared with researchers in a secure, private, and de-identified manner to help them better understand the disease and accelerate the development of effective treatments.


WHY IS THE VCP FAMILY REGISTRY IMPORTANT?

Your participation, combined with data from others living with VCP disease, creates a powerful resource that will:

  • Accelerate the path to drug development and potential therapies

  • Help researchers identify patterns and better understand disease progression

  • Attract pharmaceutical companies and research institutions to invest in VCP research

  • Connect you with future clinical trials and research opportunities

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HOW DO I REGISTER?

Registration is simple:

  1. Click the registration link

  2. Complete the comprehensive survey (takes approximately 30-40 minutes)

  3. Upload required documents (see preparation section below)

  4. Fill out ALL the surveys and we will mail you a swag pack.







IS MY INFORMATION SECURE? 

Absolutely. We take your privacy seriously:

  • All information is encrypted and is governed by ethical and privacy standards of the Northstar IRB.

  • You control your privacy settings and can choose what information to share.

  • All data shared with researchers is completely de-identified.

  • We encourage participation in research opportunities, as this helps advance treatment development.


WHAT IF I ALREADY REGISTERED VIA THE OLD REGISTRY? 

If you previously participated in the COMBINEDBrain biorepository or the original Cure VCP Disease CoRDS Registry:

  • Your previous data has been transferred to maintain continuity if you consented to sharing your data with Cure VCP Disease.

  • We have already emailed the CoRDS participants at your registered address with login instructions

  • If you didn't receive or missed this email, simply type in your e-mail you used in the CoRDS registry or CB biorepository and click "forgot your password" on the login page.


HOW SHOULD I PREPARE BEFORE REGISTERING?

To ensure a smooth registration process, please gather the following items before you begin:

Required Documents:

  • Digital copy of the patient's genetic report (ready to upload)

Medical Provider Information:

  • Name, clinic/hospital name, and zip code for your main doctors

  • Examples of doctors to list: your neurologist, primary care physician, and any other specialists treating VCP

Family Participation History:

  • Names of family members who have participated in our registry or biorepository

  • This helps us understand family connections and link family members

Additional Tips:

  • Set aside 30-40 minutes of time to complete the surveys (you can return to your place if needed)

  • Ensure you have a stable internet connection

  • Have a recent medical summary handy in case you need to reference specific dates or treatments

We are available to help:

If you have more questions or would like to continue to learn more, we invite you to join us for an information session

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