Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease
Recruiting
Observational Study
Sickle Cell Disease
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
Ready to participate?
Review the details below, then apply to join this clinical trial.
At a Glance
Age
18 and older
Sex
Any
Study type
Observational
Participants needed
500 (estimated)
Sponsor
RTI International · Other
Who this trial is looking for
This trial is looking for adults who have Sickle Cell Disease and haven't seen a specialist in the last year. Participants will complete a survey about their treatment and experience with the disease and may also have the option to join an interview about their treatment feelings.
Are You a Good Fit for This Trial?
You may be able to join if
I am 18 years of age or older
I have confirmed Sickle Cell Disease
I have not seen a Sickle Cell Disease specialist in over a year
I can read and understand English
You may not be able to join if
I am under 18 years of age
I am unable to give informed consent and have no one to help me consent
I have sickle cell trait
I have seen a Sickle Cell Disease specialist in the past year
Summarized in plain language from this trial's official eligibility criteria.
The full criteria are further down this page — only the research team can
confirm whether you qualify.
Think this trial could be right for you?
Answer three quick questions written from this study's own rules to see if you may qualify. No account needed to find out.
The goal of this observational study is to help us understand more about the best ways to help individuals living with Sickle Cell Disease (SCD) get the best care. The main question it aims to answer is: How to find individuals unaffiliated from SCD specialist care use three distinct pathways? Once unaffiliated individuals are found using the pathways, Investigators will employ linkage coordinator…
The goal of this observational study is to help us understand more about the best ways to help individuals living with Sickle Cell Disease (SCD) get the best care. The main question it aims to answer is: How to find individuals unaffiliated from SCD specialist care use three distinct pathways? Once unaffiliated individuals are found using the pathways, Investigators will employ linkage coordinators (trained staff) to engage these patients in care. Participants will be asked to fill out an assessment survey which will cover areas such as previous and current treatment, clinic and hospital experience, pain, and quality of life. Participants will also be given the option of participation in a 1-hour long interview how they feel about treatment for sickle cell disease including clinic experience, pain, and quality of life?
Trial Locations
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Eligibility Criteria
Inclusion Criteria:
* Persons must be \>/= 18 years of age
* Persons must have confirmed SCD
* Persons not seen by a SCD specialist \> 1 year +/- 3 months
* Literacy in English will be required of the consenting patient or parent/guardian
Exclusion Criteria:
* Persons \< 18 years of age
* Persons…
Inclusion Criteria:
* Persons must be \>/= 18 years of age
* Persons must have confirmed SCD
* Persons not seen by a SCD specialist \> 1 year +/- 3 months
* Literacy in English will be required of the consenting patient or parent/guardian
Exclusion Criteria:
* Persons \< 18 years of age
* Persons that are unable to provide informed consent and do not have a designated care-giver that can consent on his/her behalf
* Persons with sickle cell trait (as per hemoglobin electrophoresis)
* Persons seen by a SCD specialist \< 1 year +/1 3 months
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