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HP Registry

What is the study?

We are working together with a group of European pancreatic specialists to learn more about hereditary pancreatitis. We want to know why there is an increased risk of pancreatitis and how best to help patients with the condition. This will also allow us to improve treatment of patients with other forms of pancreatitis.

 

What is involved if you want to join the study?

We need about one hour of your time to complete some questionnaires, one on your health and clinical history, the other on your family. We will then arrange to have a small blood sample taken. You can easily complete the questionnaire at home. The blood sample will be taken after you have spoken to an expert on pancreas diseases and sometimes a Geneticist (Doctor specialising in diseases associated with genes). This will usually take place close to where you live.

The questions will be mainly about how pancreatitis has affected you, any treatment or operations that you have had in the past, as well as life style questions such as smoking and alcohol consumption. We will also be asking about other members of your family, to try and find out as much about them as possible, in particular, whether they have pancreatitis . Blood samples will be used to extract and store genetic material (DNA), you can join the study but refuse to give any blood. If you do give blood the DNA sample may be stored for up to 10 years and will be tested to see if we can identify any genetic markers or altered genes for pancreatic disease, including genes that are associated with cystic fibrosis. If we identify a gene, which is causing pancreatitis, we will suggest that unaffected family members seek genetic advice before proceeding with genetic tests, if it were appropriate.

Unless you give us your explicit permission we will not report results to you. However, you do have the option on the EUROPAC consent form to tell us you would like to be informed of any findings that are relevant to your family. In which case you will be informed verbally of the result by your local pancreatic specialist or your clinical geneticist People are encouraged to join the study, whether they want to hear their results or not. The results of this research may help to guide us to know who is at increased risk from pancreatitis. We can then discuss whether further pancreatic screening tests are needed. If you decide not to hear the results of your tests, this will not affect your general medical care in any way.

 

Confidentiality

There is a registry of all participants held securely in Liverpool. Names and addresses will be held on this database but only the EUROPAC co-ordinator will have access to these. Other members of the research team will have access to research data in an anonamysed format. No one outside of this study will have access to this data. Your GP can be informed that you have joined the study if you wish us to do so. With your permission, we would like to share information about any significant results with other members of your family for genetic counselling purposes only. Some other centres hold similar secure databases locally of participants recruited in that region. For example, details about participants recruited in France will be stored in Clichy and only anonymised data will be sent to Liverpool.

 

Adverse effects

Apart from a small risk of bruising the taking of a blood sample should not affect any participant. Genetic testing can reveal altered genes that can predict susceptibility to certain illnesses in the future. Hearing that you or members of your family are at increased risk of developing illnesses like pancreatitis can be worrying. If we find a faulty gene in a participant, we recommend that any unaffected members of the family who are thinking of being tested, should carefully weigh up the pros and cons of genetic testing in discussion with their GP in the first instance, who may recommend referral to an expert in Genetics, who will be able to offer further advice.

 

Testing children

Children who develop pancreatitis at an early age may be at risk of carrying such genes. In children that are showing symptoms of pancreatitis, a diagnostic test may be done at any age with the parent's consent. We would not consider testing any child under the age of 16 years, unless they had symptoms suggestive of pancreatitis. General advice about lifestyle modification, such as the avoidance of alcohol and prompt attention to abdominal symptoms, can be given to all children at risk. If a child becomes symptomatic, then diagnostic testing can be offered at that point.

 

Future studies

As this research work proceeds we hope to develop further research studies and recommendations. We are already conducting the largest study to date on antioxidants and magnesium in the treatment of pancreatitis, EUROPAC 2.