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Sickle Cell Kidney Biorepository

Sickle Cell Kidney (SCeK) Biorepository

Who can join

As published by the study on ClinicalTrials.gov. "Not stated" means the study hasn't said — ask the study team.

Age
18 Years to 65 Years
Sex
All sexes
Healthy volunteers
Accepted
Compensation
Not stated

Other requirements are listed under Eligibility below. Only the study team can confirm whether you can join.

What to expect

No one can promise a trial will help you personally — that is what the research is trying to find out.

What participation involves

  • Procedures mentioned: Urine samples

Only what the study's summary and detailed description on ClinicalTrials.gov say. Time periods may describe the whole study or a part of it — ask the study team what applies to you.

Show the study's own words
  • "The SCeK Biorepository is a specialized, secure repository designed for the collection of blood and urine samples from people with sickle cell disease and sickle cell trait."
Compensation
Not stated
  • Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
  • Participants are monitored closely by the research team throughout the study.
  • Some participants may receive access to an investigational treatment, which is still being studied.
  • Your participation helps researchers learn whether this approach could help future patients.

About this study

In plain language

This study stores blood and urine samples linked to medical records to learn how kidney disease starts and gets worse in people with sickle cell disease or sickle cell trait. Researchers will use new tests on these samples to look for early signs of kidney damage and better ways to protect kidneys. People with inherited blood conditions and selected people without these conditions may join.

Kidney disease is a major cause of illness and death in people with sickle cell disease and sickle cell trait. Despite these concerning facts, we do not (1) have an in-depth understanding of how kidney disease starts in sickle cell disease and sickle cell trait, (2) have detailed insights into why kidney disease is worse in people with sickle cell disease and sickle cell trait, (3) have management options that are tailored to treating or preventing kidney disease in people with sickle cell disease or sickle cell trait. The SCeK Biorepository is a specialized, secure repository designed for the collection of blood and urine samples from people with sickle cell disease and sickle cell trait. These samples are connected to detailed medical records, with the sole purpose of allowing researchers to better understand how kidney disease starts and progresses in people with the sickle cell gene. By studying these stored samples (using new tests) together with health information, researchers can find better early warning signs of kidney injury and develop better ways to protect kidney health in people with sickle cell disease and sickle cell trait.

Compensation is read from the study's own description and may be missing — always confirm with the study team.

Eligibility

Who can join

  • You must be older than 18.
  • Your estimated kidney filtering rate (eGFR) must be at least 15 mL/min.
  • You must have a hemoglobinopathy, an inherited condition affecting the protein that carries oxygen in blood. A special blood test or gene test must confirm it.
  • People without these blood conditions may be selected after review, only if their background details match those of someone already enrolled who has a blood condition.

Who can't join

  • You are 66 or older.
  • Your kidney filtering rate is below 15 mL/min, or you receive dialysis, a treatment that filters your blood.
  • You are pregnant. You may join at least 4 weeks after giving birth.
  • You have a sickle cell pain episode needing a hospital stay, emergency room visit, or pain infusion clinic visit. You may join at least 2 weeks after the severe pain ends.
  • You have active cancer and are getting treatment to bring it under control or strengthen the first treatment's results. You may be considered if your cancer is in remission and you receive chemotherapy to keep it under control.
  • You are a prisoner.

Simplified for readability. The official criteria below are what the study team uses.

Official eligibility criteria

Inclusion Criteria: 1. Age over 18 years, 2. Estimated glomerular filtration rate greater than or equal to 15 mL/min, 3. Presence of any hemoglobinopathy (will need to be confirmed by hemoglobin electrophoresis or genetic testing), 4. Controls (absence of hemoglobinopathy) will be subject to review and only selected if demographics are identical to a currently enrolled participant with a hemoglobinopathy. Exclusion Criteria: 1. Age 66 years or older, 2. Estimated glomerular filtration rate less than 15 mL/min or on dialysis, 3. Active pregnancy (may be enrolled 4 weeks or more after delivery), 4. Active sickle cell pain episode requiring hospitalization or emergency room visit or pain infusion clinic visit (may be enrolled 2 weeks or more after resolution of severe pain), 5. Active malignancy on induction or consolidation treatment. Maintenance chemotherapy in remission will be considered, 6. Prisoners.

Study sites (2)

TX