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Late Effects After Treatment in Patients With Previously Diagnosed High-Risk Neuroblastoma

This research study is looking into the long-term health effects in children and young adults who have been treated for a type of cancer called high-risk neuroblastoma. These long-term effects are sometimes called 'late effects'. We want to understand how different treatments might affect things like organ function, growth, development, and overall well-being many years after treatment finishes. By studying these late effects, researchers hope to find ways to make future neuroblastoma treatments more effective while causing fewer long-term problems. The aim is to improve the quality of life for survivors of this serious illness.

At a glance

Status
Active not recruiting
Sponsor
Children's Oncology Group
Enrolment target
376
Start
05 Jun 2017
Estimated completion
30 Sep 2026

What is this study about?

This study is called 'Late Effects After Treatment in Patients With Previously Diagnosed High-Risk Neuroblastoma'. In simple terms, it's about checking up on children and young adults who have had a serious type of cancer called high-risk neuroblastoma, many years after their treatment has finished. When someone has treatment for cancer, sometimes there can be side effects that show up much later, even after they've recovered. These are called 'late effects'.

The main goal of this study is to understand what these late effects are, how often they happen, and what causes them. Researchers will look at things like how well different organs are working, if growth or development has been affected, and how people are feeling mentally and physically years down the line. They're particularly interested in how newer treatments, including certain medicines and radiation, might influence these late effects.

By gathering this important information, the study aims to help doctors and scientists make future treatments even better. They want to find ways to treat neuroblastoma effectively while also reducing the chance of long-term health problems. Ultimately, this research is about improving the lives and health of everyone who survives high-risk neuroblastoma.

Key takeaways

  • This study focuses on understanding long-term health effects after neuroblastoma treatment.
  • It aims to improve future treatments by identifying what causes late effects.
  • Participation involves observation, physical checks, and providing blood/urine samples.
  • No new treatments or medications are given as part of this study.
  • You must have completed strong cancer treatments at least two years ago to join.
  • Your contribution helps future neuroblastoma survivors have better long-term health.

Who may be eligible?

To be considered for this study, you must have been diagnosed with high-risk neuroblastoma at least five years ago, and your diagnosis must have been after January 1, 2000. You also need to have been part of a specific past neuroblastoma study (called ANBL00B1).

It's important that you are not currently receiving strong chemotherapy treatments for neuroblastoma or any similar 'cytotoxic' treatments. You must also have finished any such treatments at least two years before joining this study. This includes chemotherapy, transplants, certain types of radiation therapy (like MIBG therapy), and other powerful medicines.

However, it's okay if you are taking milder, non-chemotherapy medicines that aim to prevent the cancer from coming back or are managing other health issues. You also cannot have active neuroblastoma at the moment. The study is open to both males and females between 5 and 50 years old.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

  1. Were you diagnosed with high-risk neuroblastoma?
  2. Was your diagnosis made after January 1, 2000?
  3. Has it been at least 5 years since you were diagnosed?
  4. Have you finished any strong chemotherapy or similar cancer treatments (like MIBG, transplant) at least 2 years ago?
  5. Are you between 5 and 50 years old?
  6. Do you currently NOT have active neuroblastoma?
Answer every question to see your result.

What does participation involve?

If you join this study, you will have a few visits that involve some medical checks. These will include giving blood and urine samples on one day. You'll also have a thorough medical check-up, which might include some laboratory tests, scans (like X-rays or other imaging), and other tests that help doctors understand your general health. You will also be asked to complete questionnaires about your quality of life, which helps to understand how your health affects your daily life. There are no new medicines or treatments given as part of this study; it's purely about observation and gathering information. The total duration of your participation will likely involve these initial assessments to collect the necessary data.

Potential risks and benefits

A potential benefit of joining this study is contributing valuable information that can help improve the care and long-term health of future neuroblastoma survivors. There are no direct medical benefits to you personally, as no new treatments are being given. Potential risks include the minor discomfort and bruising from blood draws, and the time commitment for appointments. All tests will be carried out by experienced medical staff. You are free to withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (98)

  • Children's Hospital of Alabama
    Verified postcode
    Birmingham, United States
  • Phoenix Childrens Hospital
    Verified postcode
    Phoenix, United States
  • Arkansas Children's Hospital
    Verified postcode
    Little Rock, United States
  • Kaiser Permanente Downey Medical Center
    Verified postcode
    Downey, United States
  • City of Hope Comprehensive Cancer Center
    Verified postcode
    Duarte, United States
  • Children's Hospital Los Angeles
    Verified postcode
    Los Angeles, United States
  • UCSF Benioff Children's Hospital Oakland
    Verified postcode
    Oakland, United States
  • Kaiser Permanente-Oakland
    Verified postcode
    Oakland, United States
  • Lucile Packard Children's Hospital Stanford University
    Verified postcode
    Palo Alto, United States
  • UCSF Medical Center-Mission Bay
    Verified postcode
    San Francisco, United States
  • Children's Hospital Colorado
    Verified postcode
    Aurora, United States
  • Connecticut Children's Medical Center
    Verified postcode
    Hartford, United States

Common questions

What exactly are 'late effects'?

Late effects are health problems that can appear months or even years after you've finished cancer treatment.

Will I receive any new medicine or treatment in this study?

No, this study is about observing and understanding long-term health, not providing new treatments.

Who is funding this research?

This information isn't specified in the details provided, but medical research is often funded by government bodies or charities.

How long will my involvement in the study last?

Your involvement will primarily be for the initial assessments and sample collections, which will take place on one day.

Will my personal information be kept private?

Yes, all research studies have strict rules to protect your personal and medical information.

How to find out more

Always speak to your GP or specialist before deciding to take part in a study.

Discussion

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