The CRID
Important: Before joining any research study, we recommend creating a Clinical Research ID (CRID).
The CRID lets researchers link your family's information across different studies and platforms.
Once you have a CRID, share it with every research study you join.
When you register, enter:
Disease name: ReNU2
Gene: RNU2-2
Variant: your family member's variant, as written on the genetic test report
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Create an account at thecrid.org/requestaccount.php. If you already have an account, log in. Then choose "Add a New Person" to create a CRID for yourself or a family member. The CRID website has a short video showing each step. Note that the birth date is entered as month/day/year (MM/DD/YYYY).
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A CRID (Clinical Research Identifier) is a unique code for people who take part in research. The parent or patient creates it themselves. It gives researchers a secure, consistent way to recognize the same person's information across different studies.
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Many families don't realize that information collected by one study is usually not shared with other researchers studying the same condition. Families may also be asked to fill in the same forms again and again. A CRID helps studies link and reuse information without sharing names or other personal details.
Benefits of a CRID:
Families create it, control it, and decide when to share it.
It links research information without using personal or protected health details.
It helps stop one person from ending up with several different research IDs.
It helps families keep track of which studies they have joined.
It may mean fewer repeat questionnaires.
It makes it easier for researchers to combine and compare information across studies safely.
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The CRID is international. Families anywhere in the world can create one.
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The CRID is always free for patients and parents.
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For questions or help with your CRID, email info@thecrid.org.
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Is the CRID secure? According to the CRID team, all CRID data is stored on secure Amazon Web Services servers and is encrypted both when stored and when sent. The site does not use Google Analytics.
What are the CRID's principles? It is always free for patients and parents. It is always optional for research studies. CRID data is private and is never sold or shared with third parties.
What does a CRID look like? An 8-character random mix of letters and numbers, unique to each person.
How do I use my CRID? Give it to the research team of any study you are in, or have been in.
