The cTTP Research Study is investigating a newly developed cTTP questionnaire to see if it can be used in future research to measure improvement or decline of overall well-being in people with cTTP.
There will be approximately 40 patients (28 adults and 12 adolescents, whose identities will remain anonymous) taking part in this study. The study will be done in multiple countries including the USA. You, your child or your loved one will not need to do anything to prepare, other than being ready to answer some questions regarding your experience living with cTTP. At no point before, during, or after completing the questionnaires will you be contacted to purchase anything or be asked to take any medication.
There is no cost to take part in the study. No health insurance or referrals are needed. The study will last 2-4 weeks and will involve completing a set of questionnaires initially and then again in approximately 2 weeks. Questionnaires can be completed either at home or at a study center in your area.
To thank you for your time and any inconvenience related to your participation in this study you will receive a $25 gift card for each set of questionnaires you complete ($50 total)
What is a Clinical research study?
A Clinical research study is a medical study that helps to answer important questions about tools (such as questionnaires) used to measure or diagnose conditions or investigational medications. All new tools used to measure or diagnose conditions (such as questionnaires) must be tested in Clinical research studies before they can be approved for use. Without people taking part in these studies, we would have no tools to measure or diagnose conditions and no new medications.
This cTTP study is an Observational Clinical Research Study which means it does not require you, your child or your loved one to take any medication aside from the treatment that you/they are taking in routine practice.
What is the purpose of the study?
A new questionnaire assessing the well-being and quality of life for people with cTTP has been developed recently. If you, your child or your loved one choose to participate in the study you or they will be asked to complete questions about your / their well-being and about how cTTP affects your/their daily life.
The aim of the study is to determine if this newly developed cTTP questionnaire can be used in future research to measure improvement or decline of overall well-being in people with cTTP. To test this, you, your child or your loved one will complete the cTTP questionnaire along with other types of questionnaires that have already been developed.
What happens if I sign up?
If you are interested in participating, please fill out the form below to see if you, your child or your loved one are eligible for the study (you will be told immediately). We will match you, your child or your loved one to the QuintilesIMS team running the study and seeking participants with cTTP. They will contact you to explain more about the study before you make your decision about participating.
Frequently Asked Questions
The study will last 2-4 weeks and will involve completing 2 sets of questionnaires either at home or at a study center in your area; one initial set and a second set approximately 2 weeks later. It will take approximately 30 minutes to complete each set of questionnaires.
To thank you for your time and any inconvenience related to your participation in this study, you will receive a $25 gift card for each set of questionnaires you complete ($50 total). Please discuss this with the study team when they contact you.
There is no cost to take part in the study. No health insurance or referrals are needed.
The study team will be able to explain more about what the cTTP Study will involve and it is up to you to decide if you, your child or your loved one want to take part. Participation in this study is voluntary. Your decision to participate / not participate in this study will not affect your current or future relations with your physicians. If you decide to participate, you are free to withdraw at any time without affecting those relationships.