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Keep up to date with the latest news from the CF Twin Sib Study with our newsletters.
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General Study Information |
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The CF Twin/Sib Study team is conducting a nationwide collection of twins and siblings with CF, sponsored by the Cystic Fibrosis Foundation and the National Institutes of Health. We are obtaining a blood sample from twins, siblings, and their parents, and clinical information from the affected twins and siblings. All information collected will be kept confidential and will be used solely for CF research.
This information will be used to determine which patient symptoms may be attributed to the CF (CFTR) gene and which to other possible genes. It will also be used to study the interaction of genes and environment in CF and the effect this has on disease course.
For more information about our studies, please view our Study Protocol. |
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The following IRB materials are for your use:
*Please note: All 2010 approved documents have been approved for 2011 by the Johns Hopkins local IRB. These remain the appropriate documents for use through February 2012.
- 2010 Approved Study Protocol - DOC | PDF
- 2010 Approved Stamped Consent - DOC | PDF
- 2010 Approved Assent Form - DOC | PDF
- 2011 IRB Approval Letter - PDF
- Confidentiality Certificate - PDF
- Lay Study Description - DOC
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Current Centers: Payments & Supplies |
Request for Supplies / Shipment notification
You can call the Study Team at any time toll free 866-245-8065 or email the Study Coordinator at
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. Please indicate if you need supplies urgently. If you are calling/emailing to inform us of a shipment, we appreciate if you provide the tracking number and let us know if the shipment involves a new family or a member of a family already participating.
Submit Invoice / Track Payment
Invoice Instructions:
- Download (PDF | DOC) a copy of the template and open.
- Cut and paste the body of the template onto your letterhead.
- Fill in the date of the invoice, and the number of siblings or parents you have recruited.
- Calculate the total due.
- Complete the information needed to send the reimbursement.
- If you would like to use a reference number, please do so.
- Complete the dates applicable to the invoice period, and add the name of your Center or PI.
- Email your completed template to:
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.
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For Providers
