Participants
Welcome study participants! Thank you for your valuable participation in our research studies that aim to identify the causes of the type of chronic kidney disease affecting your community. We could not do our work without you and want to recognize how important your collaboration is in our goal to understand the causes of CKDnt.
For the past few decades, Chronic Kidney Disease of non-traditional etiology (CKDnt) has been one of the leading causes of death and disease in Nicaragua and El Salvador. Our research team at Boston University has been involved in CKDnt research in Nicaragua since 2009, after ASOCHIVIDA, a collective of former sugarcane workers in Nicaragua living with the disease, spoke out and let the world know about this epidemic.
Researchers believe that the disease is most likely caused by a combination of factors. At birth, everyone is unique. There may be genetic differences that make certain people more likely to be harmed from similar external factors. During childhood and adolescence, factors such as diet, medication, and environmental exposures may play a role in the growth and development of the kidneys. When children grow older and eventually join the workforce, exposure from physically laborious jobs increases the risk of developing CKDnt. Occupational factors could directly be causing harm to the kidneys, or they could be causing harm because of another reason that we do not know.
The goal of all of our work is to identify what factors are causing this epidemic of CKDnt to be able to help prevent people from falling ill.
Find answers to common questions asked by participants:
What does it mean to be 'at-risk'?
To be at-risk means there are many factors in your daily life that may increase the likelihood of developing disease. Risk does not mean that disease will definitely occur. Risk factors are either modifiable, meaning you can take measures to change them, or non-modifiable, which means they cannot be changed.
What is creatinine, and why is it important to measure?
Creatinine is a chemical compound left over from energy-producing processes in your muscles. Healthy kidneys filter creatinine out of the blood. A creatinine test is a measure of how well your kidneys are performing their job of filtering waste from your blood.
What symptoms are experienced by participants living with kidney disease?
Many people in early stages of kidney disease may not experience symptoms because the body is usually able to cope with a significant reduction in kidney function. Kidney disease is often only diagnosed at this stage if a routine test for another condition, such as a blood or urine test, detects a possible problem. If it’s found at an early stage, medicine and regular tests to monitor it may help stop it becoming more advanced.
A number of symptoms can develop if kidney disease is not found early or it gets worse despite treatment. Symptoms can include: weight loss and poor appetite, swollen ankles, feet or hands – as a result of water retention (oedema), shortness of breath, tiredness, blood in your urine, an increased need to pee – particularly at night, difficulty sleeping (insomnia), itchy skin, muscle cramps, nausea, lower back pain, headaches. This stage is known as kidney failure, or end-stage renal disease, and may eventually require treatment.
Is there a cure for CKD
There is no known cure for CKD. The two treatments for kidney failure are transplant and dialysis, with the treatment of choice (transplant) being the least accessible. Dialysis treatment replicates some of the kidney’s functions, which may be necessary in advanced stages of kidney disease.
Are there ways to prevent CKD?
Prevention practices to reduce the chances of developing CKD include:
- Routine medical check-ups –be aware of biomarkers that indicate how your body is functioning, such as creatinine, potassium, cholesterol, glucose, uric acid, to name a few
- Consume lean sources of protein, low levels of saturated fat, salt and sugar, avoid use of alcohol and tobacco products
- Reduce overexertion and direct sun exposure by resting in shady areas
- Avoid use of NSAIDs and antibiotics that are bad for the kidney
- Drink enough water (3.5 Liters per day, recommended)
How does the information shared by participants remain confidential?
Our team of investigators maintains strict confidentiality of your personal information. All paper records and computer files are kept in locked file cabinets in locked rooms and only selected study staff will have access to this information. Paper files are transported from Nicaragua to Boston University, as well as scanned and sent through a secure communication channel. In addition, all electronic data records are password protected. Information from the study will never be released in a manner that could result in the identification of a participant. Employers will not be informed of any individual level results from this study and will have no record of who did and did not participate in this study.