We want to make sure that you feel comfortable providing this information and wanted to address some of the frequently asked questions below. Your contributions to Castlebank are greatly appreciated and the Castleman disease Research team is going to great lengths to ensure that your data is kept private. If at any point you have questions about your participation in this research study, you should call (215) 349-5713.
- What is the purpose of Castlebank?
- What samples can I donate?
- How will researchers use my samples?
- Will I have to pay anything to be in this study?
- Who can participate?
- What is the donation process?
- If I change my mind can I leave the study or only donate certain types of samples?
- I have previously sent my name and contact information to the CDCN website – how is this different?
- Will my data and samples be identified by my name?
- What can I do if I have questions?
What is the purpose of Castlebank?
Castlebank is designed to collect biological samples and related medical information on Castleman disease patient. Researchers are trying to learn more about Castleman disease. Much of this research is done using human samples and health information. Through these studies, researchers hope to find new ways to detect, treat, and maybe prevent or cure this disease.
What samples can I donate?
Castlebank is accepting both previously collected samples from past medical procedures as well as samples obtained during future medical procedures or blood draws. It is also accepting ‘spit kits’ and stool. Our team will work with you to identify and collect all past samples and will coordinate transfer of samples from future medical procedures.
How will researchers use my samples?
Researchers will use many techniques to compare samples, including sequencing of genes, and examinations of inflammatory markers, cells, and signaling pathways using cellular, molecular, biochemical and genetic techniques. This may allow researchers to understand the causes of CD, and design treatments based on their findings.
Will I have to pay anything to be in this study?
If you are in the Philadelphia area and able to visit the University of Pennsylvania, there are no costs to you or your insurance.
If you are not in the Philadelphia area and will have your blood drawn by your local physician, you will be responsible for the costs of the blood draw. You can work with the CDCN to get the cost of the blood draw reimbursed. Please email the CDCN at Castlebank@uphs.upenn.edu prior to scheduling a draw.
We will mail collection kits to you. If you bring the kit with you to your already scheduled blood draw, so that the research samples can be drawn at that time, no additional costs should be incurred. No costs are associated with providing a ‘spit kits’ or stool samples.
Who can participate?
Castlebank is a biobank for patients with Castleman disease. Participation will require a pathology report that suggests “Castleman disease.” It will also collect samples from family members of those diagnosed with Castleman disease, as well as samples from individuals suffering from related-disease.
What is the donation process?
You will be directed to an online portal where you will be asked a few questions about your eligibility to participate in this study. Should you be eligible to participate, a member of our team will contact you with information on how to review and complete an informed consent form, which will further explain the study. Completion of the consent form is required for participation in the study.
Once you have completed the consent form, a member of our team will coordinate a time for you to visit either your local physician’s office to provide a sample, or a time to donate at the University of Pennsylvania. If you choose to donate at your local physician’s office, we will mail to you sample collection kits, and will cover return shipping costs.
On the day of your donation you will also answer a short survey about the symptoms that you are experiencing. We may also ask you a few questions about your contact information, demographic information (age, race, sex, etc.), diagnosis information (date of diagnosis, subtype, etc.), and information about hospitalizations and physicians that you have seen for your Castleman disease.
If I change my mind can I leave the study or only donate certain types of samples?
You will have the option to provide a one-time or multiple samples. If you chose to provide multiple samples, you can change your mind at any time. You are not required to provide all sample types, only those you are comfortable donating. If you decide to participate, you are free to leave this study at anytime
I have previously sent my name and contact information to the CDCN website – how is this different?
If you have previously sent your name and contact information to the CDCN, you have been included on our mailing list. If you would like to donate samples, please also complete the registration at www.cdcn.org/samples so we are aware of your interest.
Will my data and samples be identified by my name?
No, we will assign a coded number, Global Unique Identifier (GUID), developed by the National Institutes of Health (NIH) to your data and samples.
What can I do if I have questions?
If at any point you have questions, concerns, or complaints about your participation in this research study, you should speak with the Principal Investigator, Dr. David Fajgenbaum at (215) 614-0936.