Registry Portal: Procedure

 

 

Procedure

Everything begins with your creation of a UMRC Applicant Registry Account.  You must also download, complete and return the Initial Paperwork Packet.  This packet is available through the next tab on the menu labeled “For Whom?”  The Initial Paperwork Packet is a PDF document which must be printed and completed by hand.  You then will have the option to return the packet by physical mail, or to scan the completed document back into a new PDF document and post it to your Applicant Registry Account.  More details are included on the actual packet.

When you register, you will be asked first to create a username and password.

Registration information is only visible to administrative research staff of UMRC.  Your privacy is of paramount concern.  You will be asked only:

1)      Your name

2)      Your date of birth

3)      Your preference between “paying own laboratory fees” or “awaiting research grant”.

There is also a space where UMRC staff can indicate receipt of the Initial Paperwork Package in either “partially complete” or “fully complete” status.

When your Initial Paperwork Package is received and “fully complete,” you will be notified of your status and told that you will then be re-contacted when it is possible to begin the research or public health screening process.

If you are re-contacted as a UMRC participant, you will first be asked to provide a 24-hour urine sample.  You will be mailed a collection kit with instructions to the address provided in your Initial Paperwork Package.  This kit includes a container in which you are asked to collect all urine passed in a 24-hour period.  You are otherwise asked to keep a normal routine and normal diet for this time period.

There are also two possible additional steps to be undertaken following receipt of your 24-hour urine sample.  These include:

1)  Blood sample taken for analysis of genomic abnormalities

2)  Clinical examination at a collaborating medical office.

Should you wish to begin the participant process, please complete all necessary paperwork and either mail it to us or post a completed, scanned copy to your registration account.  We ask that you please do your best to write legibly.

For your test results to be included in UMRC research, you will have to sign a release allowing us to use your unidentified results in scientific publication.

You may email us with questions about the registration and participant process any time at umrcinfo@umrc.net..