Wales Wide

Posted 12 months ago by Wales Gene Park

PETReA: A study to find out whether a PET-CT scan can help to tell who needs to have rituximab after the initial treatment for lymphoma. Follicular Lymphoma is a type of non Hodgkin lymphoma (NHL). Doctors usually put NHL into 2 groups, depending on how likely they are to grow and spread. The 2 groups are low grade and high grade NHL. Follicular lymphoma is a type of low grade NHL. For follicular lymphoma, you usually have treatment with a combination of cancer drugs. You might have one of the following: R-CHOP R-CVP bendamustine and rituximab (BR) This is called the induction treatment. After the induction treatment, you might have rituximab (R) alone. This is the maintenance phase. But having more treatment with rituximab doesn’t help everyone with follicular lymphoma. Doctors would like to know who needs to have rituximab after their initial treatment (induction). In this study, they are looking...

 Non-Hodgkin lymphoma /  Wales Wide

Posted 1 year ago by Wales Gene Park

The aims of this study are to Find out if surgery of the prostate, bladder, penis and kidney causes changes to biomarkers in the body See if there is a link between changes in these biomarkers and complications after surgery See if there is a link between changes in these biomarkers and the cancer coming back

 Urological Cancers /  Wales Wide

Posted 1 year ago by Wales Gene Park

The UKALL14 trial is looking at different treatments for ALL. The team would now like to do a sub study to find out more about the genes of the leukaemic cells. They also want to find out more about whether they can predict how well treatment will work based on these changes. In this study you have the standard chemotherapy treatment for ALL at your hospital. The study team will ask for small amount of your bone marrow sample  that is taken before starting your treatment. They are looking for a substance (biomarker ) in the sample they can use to follow how well your leukaemia responds to treatment. They are also looking for any gene changes in the cells of your leukaemia.

 Acute lymphoblastic leukaemia (ALL) /  Wales Wide

Posted 1 year ago by Wales Gene Park

OPTIMA: A trial looking at a test to predict who might benefit from chemotherapy for breast cancer Chemotherapy and hormone treatment are currently offered to many people as part of their breast cancer treatment. This is to reduce the chance of the cancer coming back. Chemotherapy is given as an injection, usually every three weeks over a few months. Hormone therapy is a daily tablet taken for five to ten years. Younger women may also have a monthly injection to stop menstrual periods. Recently however it has been argued that chemotherapy may have little effect on the subtype of breast cancer that is broadly identified as being hormonally responsive without HER2 gene amplification/HER2 protein overexpression and with a low or intermediate grade. Recent research indicates that some people with this subtype of breast cancer may not benefit from chemotherapy, and would do just as well with hormone treatment alone. The...

 Breast Cancer /  Wales Wide

Posted 1 year ago by Wales Gene Park

Doctors can use surgery to remove: prostate cancer bladder cancer penile cancer kidney cancer Doctors think that one way to monitor patients more closely when they have surgery would be to use biomarkers. A biomarker is a substance in the body that can be measured. In this study, the researchers will look at people’s blood and urine samples before and after surgery to measure certain biomarkers. The aims of this study are to Find out if surgery of the prostate, bladder, penis and kidney causes changes to biomarkers in the body See if there is a link between changes in these biomarkers and complications after surgery See if there is a link between changes in these biomarkers and the cancer coming back You will not directly benefit from taking part in this study. If the researchers find that biomarkers are useful, it could help to improve the care and treatment...

 Penile Cancer /  Wales Wide

Posted 1 year ago by Wales Gene Park

PARTNER: Randomised, phase II/III, 3 stage trial to evaluate the safety and efficacy of the addition of olaparib to platinum-based neoadjuvant chemotherapy in breast cancer patients with TNBC and/or Gbrca Surgery is often used for early breast cancers. Sometimes you have chemotherapy before surgery. This is called neo adjuvant chemotherapy. It can shrink the cancer and make the surgery more successful. In this trial, researchers are looking at whether adding a drug called olaparib (also called Lynparza) improves neo adjuvant chemotherapy. Olaparib is a type of biological therapy called a PARP-1 inhibitor.  PARP is a protein that helps cells to repair. Doctors think that olaparib can stop the cancer cells from repairing themselves. In this trial, people have 1 of the following: chemotherapy chemotherapy with olaparib The chemotherapy drugs used in this trial are: paclitaxel carboplatin These are commonly used to treat breast cancer but are not routinely used to...

 BRCA1 and BRCA2 /  Wales Wide

Posted 1 year ago by Wales Gene Park

The Scotty Study: whole genome sequencing study of young colon cancer patients and their parents Scientists in Edinburgh are leading a groundbreaking UK-wide study that could help doctors and scientists identify patients at risk of developing bowel cancer and find new treatments for the disease. Professor Malcolm Dunlop and his team from the Cancer Research UK Edinburgh Centre is leading the SCOTTY study (Sequencing of COlon Trios in The Young). Funded by Cancer Research UK, the research group is studying the genetic make-up of patients who have been diagnosed with bowel cancer at a very young age. The scientists are searching for mutations in the DNA of young bowel cancer patients, to enable them to define more of the underlying genetic causes of the disease. There are around 41,700 new bowel cancer cases in the UK every year*, and every year around 16,000 people in the UK die from the...

 Colon Cancer /  Wales Wide

Posted 1 year ago by Wales Gene Park

A trial comparing surgery, conventional radiotherapy and stereotactic radiotherapy for localised prostate cancer (PACE) If prostate cancer is diagnosed before it has spread outside the prostate gland, there are several treatment options including surgery to remove the prostate gland, external radiotherapy and internal radiotherapy (brachytherapy). Some men may now also be offered a new way of having external radiotherapy called stereotactic radiotherapy. You have stereotactic radiotherapy over a shorter period of time than conventional radiotherapy. All of the treatments listed above work well, but doctors don’t know if one is better than the other or which one has the fewest side effects. In this trial, some men will have keyhole surgery to remove the prostate gland (laparoscopic prostatectomy), some will have conventional radiotherapy and some will have stereotactic radiotherapy. The aim of the study is to compare the different treatments to find out How long men live after each treatment...

 Prostate Cancer /  Wales Wide

Posted 1 year ago by Wales Gene Park

National Study of Colorectal Cancer Genetics There are several different factors that can increase risk of developing bowel (colorectal) cancer. One is an inherited faulty gene (genetic mutation). An inherited genetic mutation may mean that several people in the same family develop bowel cancer. This is called a strong family history’. Inherited conditions such as familial adenomatous polyposis (FAP) or hereditary non-polyposis colorectal cancer (HNPCC) also increase risk. The increase in risk will depend on which gene is damaged, or even on which part of the gene is damaged. Some genetic mutations are ‘high penetrance’ and increase risk a lot. Others are ‘low penetrance’ and don’t increase risk very much. The aim of this study is to find out more about high penetrance genes, and how much they increase risk. And to look for new low penetrance genes.

 Rare Non-specific /  Wales Wide

Posted 1 year ago by Wales Gene Park

Researchers want to know more about people who have mesothelioma, their symptoms and how it affects their life. Mesothelioma of the lung is difficult to treat. Researchers are looking for better treatments and how to improve care for people with mesothelioma. In this study they will collect information about: your quality of life any symptoms you have They will also collect medical information including: blood samples any tests you might have Mesothelioma can cause fluid to build up between the sheets of tissue that surround your lung. Treatment for this is to drain the fluid off. The researchers also want to collect samples of this fluid. The team will use this information to: find out more about mesothelioma improve the care for people with mesothelioma

 mesothelioma /  Wales Wide

Posted 1 year ago by Wales Gene Park

UK-PSC is a collaborative venture between NHS Trusts across the UK, researchers and patient groups aimed at improving our understanding of PSC and the way it impacts on the lives of patients. People of all ages (including children) with PSC are encouraged to join.

 Primary Sclerosing Cholangitis /  Wales Wide

Posted 1 year ago by Wales Gene Park

The PBC Genetics Study is a national effort to establish a PBC DNA collection consisting of DNA samples from approximately 5000 patients with PBC. The DNA collection has already been used for a genome-wide association study (GWAS) of PBC.  The next major analysis will be a genome wide association study of response to Ursodeoxycholic acid (UDCA).

 Primary Biliary Cirrhosis /  Wales Wide

Posted 1 year ago by Wales Gene Park

International Penile Advanced Cancer Trial (International Rare Cancers Initiative Study) (InPACT) Penis cancer is a rare disease with a limited body of evidence on which to base the majority of management decisions. In 2011, 558 new cases of penis cancer were registered. Spread to lymph nodes in the groins and the pelvis is the most important prognostic factor: around 80% of patients who have a single involved lymph node in the groin will be alive at 5 years, but only 10% of patients who have involved deeper pelvic lymph nodes will survive. Conventional treatment for patients with positive groin nodes is surgery to remove all the affected nodes. Chemotherapy (CT) given before surgery (neoadjuvant CT) is shown to shrink affected nodes, but the impact of this approach on survival has not been assessed. Use of synchronous chemoRT (radiotherapy given at the same time as CT) has traditionally been in two...

 Penile Cancer /  Wales Wide

Posted 1 year ago by Wales Gene Park

Opsoclonus myoclonus syndrome (OMS) is a rare disorder of the nervous system (incidence 1/5 million/year) with onset usually in the second year of life. It presents as jerky movements of the eye (opsoclonus) and body (myoclonus), with ataxia, irritability and sleep disturbance, and is associated with subsequent learning, movement and behavioural problems. About 50% of children with OMS have an underlying neuroblastoma and it seems likely that it is an immune-mediated, sometimes paraneoplastic, condition. Steroids, often supplemented with other immunosuppressants, are the primary treatment but there is limited evidence for drug choice and dosage and little knowledge of the relationship between early symptomatic response and later cognitive outcome. This study will examine drug response of OMS children, with and without NB. 100 children (15 from the UK), recruited over 3 years across 8 European countries, will be treated with an escalating 3-step schedule. All will receive a pulse of dexamethasone...

 Opsoclonus Myoclonus Syndrome /  Wales Wide

Posted 1 year ago by Wales Gene Park

Would you like to know more about your kidney disease? Would you consider joining a national database? The National Registry of Rare Kidney Diseases (RaDaR) is a research initiative by UK kidney specialists (the Renal Association and the UK Renal Registry). It is designed to gather information from patients with rare kidney diseases. This will give a much better understanding of how these illnesses affect people. It will also speed up research. How does it work? Information about your treatment and any medications you are on will be entered into the RaDaR database by a member of your hospital’s research team. You will be given login details to see your information online via a website called Patient View (www.PatientView.org), if your hospital is signed up to this. Doctors and other researchers who are interested in your specific condition are working together as part of a Rare Disease Group (RDG). They have access to...

 Nephrology /  Wales Wide


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