CLINICAL TRIAL

Kidney donation and transplant information made easy for End-stage Renal Disease

Recruiting · Any Age · All Sexes · Buffalo, NY

Increasing Live Donor Kidney Transplantation Through Video-based Education and Mobile Communication

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About the trial for End-stage Renal Disease

Eligible Conditions
End-stage Renal Disease · Kidney Diseases · Kidney Failure, Chronic · Renal Insufficiency, Chronic · Chronic Kidney Disease (CKD)

Treatment Groups

This trial involves 2 different treatments. Kidney Donation And Transplant Information Made Easy is the primary treatment being studied. Participants will all receive the same treatment. There is no placebo group. The treatments being tested are not being studied for commercial purposes.

Main TreatmentA portion of participants receive this new treatment to see if it outperforms the control.
Kidney donation and transplant information made easy
BEHAVIORAL
Control TreatmentAnother portion of participants receive the standard treatment to act as a baseline.

Eligibility

This trial is for patients born any sex of any age. There are 4 eligibility criteria to participate in this trial as listed below.

Inclusion & Exclusion Checklist
Mark “yes” if the following statements are true for you:
People who are 18 years or older are allowed to vote. show original
The person was referred to the transplant center to get a kidney transplant. show original
has access to the internet
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Odds of Eligibility
Unknown<50%
Be sure to apply to 2-3 other trials, as you have a low likelihood of qualifying for this one.Apply To This Trial
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Approximate Timelines

Please note that timelines for treatment and screening will vary by patient
Screening: ~3 weeks
Treatment: varies
Reporting: immediately post baseline, 1 month, 6 month, and 12 months
This trial has approximate timelines as follows: 3 weeks for initial screening, variable treatment timelines, and reporting: immediately post baseline, 1 month, 6 month, and 12 months.
View detailed reporting requirements
Trial Expert
Connect with the researchersHop on a 15 minute call & ask questions about:
- What options you have available- The pros & cons of this trial
- Whether you're likely to qualify- What the enrollment process looks like

Measurement Requirements

This trial is evaluating whether Kidney donation and transplant information made easy will improve 1 primary outcome, 4 secondary outcomes, and 1 other outcome in patients with End-stage Renal Disease. Measurement will happen over the course of 12 months.

Time to waiting-list placement
12 MONTHS
The first time from evaluation to active placement on the kidney transplant waiting list will assessed via medical record review.
Living Donor Inquiry
12 MONTHS
Living donor inquiry to the transplant center on behalf of the participant by telephone, email, or mail within 12 months from enrollment. Each inquiry is captured for all patients as a discrete field in the electronic medical record within 12 months from enrollment. An inquiry includes any request for information or evaluation to be a living kidney donor. in which the recipient is specified.
LDKT Knowledge scale
IMMEDIATELY POST BASELINE, 1 MONTH, 6 MONTH, AND 12 MONTHS
Developed specifically for this study as a measure of patients' knowledge about LDKT as delivered in the intervention condition. In this 12-item true-false questionnaire, total scores range from 0-12 with higher scores indicating greater LDKT-related knowledge. The scale captured different dimensions of knowledge including donor eligibility criteria, clinical outcomes, costs of the donation procedure, donor diet and medications, donor priority for transplant, and kidney paired donation.
LDKT Readiness
IMMEDIATELY POST BASELINE, 1 MONTH, 6 MONTH, AND 12 MONTHS
A measure of one's readiness for living-donor kidney transplantation. This 1-item scale measures the degree to which a person is ready for LDKT and is adapted from existing measures in the literature. Response options correspond to 5 stages of change based on the Transtheoretical Model and Stages of Change and are rated on a scale of 1 to 5, with higher scores indicating greater readiness.
LDKT action behaviors
IMMEDIATELY POST BASELINE, 1 MONTH, 6 MONTH, AND 12 MONTHS
A measure of ongoing progress toward living donor kidney kidney transplantation or waitlisting. To assess LDKT action behaviors patients will be asked whether they had done any of 11 transplant-related behaviors adapted from existing measures in the literature. Patients who indicated they had done the action will counted and scores will range from 0 to 11.
LDKT Concerns Scale
IMMEDIATELY POST BASELINE, 1 MONTH, 6 MONTH, AND 12 MONTHS
Developed specifically for this study as a measure of patients' concerns about LDKT. Questions were drawn from existing measures in the literature. We created a 6-items scale that captured concerns about LDKT including donation costs, evaluation process, function with a single kidney, poor outcome, and surgical risk as well as one question about access to deceased-donor kidney transplantation. Items are rated on a scale of 1 to 4. Higher scores indicate greater concerns about live kidney donation.

Who is running the study

Principal Investigator
L. K.
Liise Kayler, Primary Investigator
State University of New York at Buffalo

Patient Q & A Section

Please Note: These questions and answers are submitted by anonymous patients, and have not been verified by our internal team.

What causes end-stage renal disease?

There are many different causes, usually with many different effects. The major causes of end-stage renal disease include diabetes and hypertension (high blood pressure); glomerulonephritis may also be a contributor. It is more difficult to find a specific cause in people who have the disease. For information of a more personalized approach to treating end-stage renal disease, see: www.treatmentsforkidneydiseases.org.

Anonymous Patient Answer

How many people get end-stage renal disease a year in the United States?

Rates of ESRD may be increasing more rapidly among blacks than whites. Rates of ESRD and death due to ESRD will likely remain high in the future.

Anonymous Patient Answer

Can end-stage renal disease be cured?

ESRD is a devastating disease with a very poor prognosis. The treatment of acute kidney injury resulting from ESRD is paramount. While no curative treatment has been identified, some improvements can be made using current dialysis techniques to prolong or eliminate dialysis.

Anonymous Patient Answer

What is end-stage renal disease?

ESRD is a disease syndrome characterised by the progressive deterioration of the ability to regulate volume and osmolarity. The two major clinical manifestations of ESRD are hyperkalaemia and metabolic acidosis. Although the pathogenesis of ESRD has not been fully explained, it is likely to be multifactorial and may involve a range of aetiological mechanisms, some of which predispose to ESRD and other complications of this disease.

Anonymous Patient Answer

What are common treatments for end-stage renal disease?

No direct kidney or lung transplantation is available to people on the waiting list for a kidney. Instead, in many European cities, some patients are offered dialysis and sometimes a kidney transplant. Dialysis treatment was only available because of the existence of a national kidney registry which tracks patient survival among other data and monitors waiting times. In the United States, the situation is different and some patients are offered kidney transplantation. In the United States, some patients are offered lung transplantation. In China and Singapore dialysis and an artificial kidney is available while in Europe, lung transplantation is the preferred treatment because of the lack of dialysis facilities.

Anonymous Patient Answer

What are the signs of end-stage renal disease?

Signs of early-stage renal dysfunction may include nocturia, loss of appetite, anorexia and fatigue. As kidney function worsens, signs of electrolytes in kidney-related complications, such as volume overload and anemia are observed. When end-stage renal disease is seen with accompanying cardiovascular disease, signs include elevated serum lipid levels, edema, and loss of physical ability.\nhttps://www.researchgate.

Anonymous Patient Answer

What is the latest research for end-stage renal disease?

There is no evidence that dialysis is an effective treatment for patients who are candidates for renal transplantation. This evidence should always be considered when allocating limited healthcare resources. It should be a key consideration if patients with chronic renal failure and their doctors anticipate significant improvement in quality of life after their transplant is completed.

Anonymous Patient Answer

How does kidney donation and transplant information made easy work?

With regard to the issue of kidney donation and transplant information, education about various aspects of the donation process, and strategies to make the donation process easier was needed.

Anonymous Patient Answer

What are the common side effects of kidney donation and transplant information made easy?

Common side effects of kidney donation and [transplant](https://www.withpower.com/clinical-trials/transplant) information made easy are most commonly gastrointestinal and include nausea and vomiting, decreased appetite, abdominal pain, diarrhea, and constipation. Additional side effects are almost equally common; most often there is a temporary feeling of coldness in the legs, sweating more, shortness of breath, palpitations, anxiety, feeling of pressure in the chest, and sudden changes in blood pressure and pulse. If you become faint, lightheaded, short of breath, or have chest pain or pains in your back, neck, shoulders, or arms, see a health care provider immediately. If your heart rate drops, call your health provider immediately.

Anonymous Patient Answer

Have there been other clinical trials involving kidney donation and transplant information made easy?

For patients, clinicians, and patients wanting to participate in the [kidney transplant](https://www.withpower.com/clinical-trials/kidney-transplant)ation procedure, the results should be simple and intuitive: one-stop website and self-regulatory information on the transplant center site on which patients can get all the information they need to make informed decisions.

Anonymous Patient Answer

Does kidney donation and transplant information made easy improve quality of life for those with end-stage renal disease?

The quality of information supplied to ESRD patients of potential kidney donors was poor. This was an important contributor to poor understanding of kidney donor transplantations. Increasing information on kidney grafts and transplantation procedures could assist the patients in better understanding the procedure and potentially lead to better outcomes.

Anonymous Patient Answer

Is kidney donation and transplant information made easy safe for people?

The need of the people about to donate his/her kidney to get the best treatment in the kidney disease in a timely manner should be known. Awareness of the disease would be the best and only option to make this a safe and affordable thing.

Anonymous Patient Answer
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