FAQ

Genes are the code that determines what the cells in your body produce. They are like the instructions of a recipe. There are approximately 20,000 genes that are spread across 26 pairs of chromosomes. They are made up of sequences of bases (ingredients) which are specific molecules made up of particular sugars and protein, and are represented by the letters A, C, T and G.

We are interested in looking for variations in the sequences of these letters. Changes in these letters can cause the protein to be made in a different way, like a spelling mistake in a recipe. Some of these changes result in the diseases we are studying. The Parkinson’s Families Project aims to find previously undiscovered gene changes. We are particularly interested in studying the genetic make-up of people with Parkinson’s who developed Parkinson’s before the age of 45, or who have a family history of other relatives affected by Parkinson’s.

You can join in the study if you meet at least one of the following criteria.

1)You are eligible to join the study if you have been diagnosed with Parkinson’s or parkinsonism, and you noticed the first symptoms at or before the age of 45 years.

2)You are also eligible to join in the study if you have been diagnosed with Parkinson’s or parkinsonism, and at least one of your family members has also been affected by Parkinson’s or parkinsonism.

In addition, if you are a relative of someone who meets the criteria above, you can also join in the study once your family member who is affected by Parkinson’s has joined in.

You will need to read through a participant information sheet, and you will have the opportunity to discuss any questions with a member of the study team. You will need to sign an informed consent form to indicate you are happy to join in the study. You will be asked to complete some questionnaires about your symptoms, family history and environmental background. Some of the questions may be about problems that do not affect you. We may also ask you some questions about your symptoms and previous medical tests.

You will be asked to complete a brief clinical examination of your cognition, movement and balance. You will then need to donate a blood sample, from which we will store and analyse your genetic material (DNA). The blood sample collection should take no longer than 10 minutes. We can use a saliva sample if this is more convenient for you, which can be sent in the post. You can also choose to be informed about future research studies.

As this research is a “one stop” study, we will not plan to contact you routinely after your single study visit. However, in some situations we may need to contact you to obtain further information or clarification about your symptoms, clinical history or family history. We will ask for your permission to be contacted in the future, both for follow-up of this particular study as well as information about future studies. You can choose not to be contacted in the future if you wish.

With your consent, we will also share your name, postcode, date of birth and NHS number with the NHS body, NHS Digital (formerly the Health and Social Care Information Centre). The information we share will be used by NHS Digital and other central UK NHS bodies in order to provide us with information about your health status.

We will code your sample, so that a number rather than a name is used in further analysis. The link between the code and your name will be kept confidential, and your personal contact details and identifiable medical details will be kept secure on a highly secure database. We will share some of your personal details with NHS Digital and receive health status data back from NHS Digital, through encrypted secure communication. Coded samples and data (i.e. without your name) may be shared with other research groups around the world for analyses. We will store the study results centrally on a separate, highly secure web-based database. This will enable us to analyse the information gathered for this research. When this study is completed we will continue to hold the data on our computer network. You may ask for your personal information to be removed from the databases at any time, in accordance with the Data Protection Act 2018 and the General Data Protection Regulation (GDPR).

We will collect and hold personal data and research data.

Personal data: We will hold written records linking participants’ study codes with personal identifiable information which will be stored securely in locked filing cabinets, and on a highly secure database meeting the highest standards (Information Governance Toolkit guidelines and ISO27001 certification). We need to store your name and contact details so that we can monitor your future health and care.

Research data: Research study data will be entered and analysed anonymously using study codes. Data security will be managed within local standard operating procedures. This anonymized research data will be hosted centrally through a separate, secure web based database holding research data without personal details. Access to the central database will be protected and restricted to members of the research team. You may provide consent and complete study questionnaires from home using a highly secure, encrypted web connection, although these can be completed in hand written, paper format.

Collaboration: Anonymous study information may made available to collaborators at other sites in the UK and overseas and may be made publicly available to bona fide researchers to enable the combined analysis of samples from different, large patient series around the world. This may include commercial companies. These are rare conditions and it is likely that sharing and collaboration between research groups and companies in different countries will be needed to make the best use of the study. Transfer of study data will be managed in a highly secure and anonymised format.

Work in this study will be performed on a research basis and we are not generating clinical results for you or for your medical records. Any possible new research findings need to be confirmed before they can be used as NHS tests.

When you give your consent to join the study we will ask you if you wish to know if there are any changes that are detectable on an approved NHS test. This is entirely your choice, and you can change your mind after the study visit by writing to us.

However, if we come across something that we think may possibly have an impact on your future health or that of your family, and for which there are specific treatments or preventative measures which will help you or your family, we would like to tell you about this. For example, some forms of heart disease (such as heart rhythm problems) can be determined with a genetic test which may lead to treatment which will prevent further problems. Similarly, some cancers such as breast cancer can be associated with gene changes. If these were identified then you or other family members may be advised to have detailed screening to try and identify cancer early.

Currently there is no difference in the treatment that you will receive as a result of knowing any gene changes. This might change soon, however, if potential new drug studies select participants depending on the presence of particular gene changes.

Some genetic changes identified in Parkinson’s research may indicate that there is an increased risk of Parkinson’s in your family. Currently this is relatively unusual, but this may change as more gene changes are identified. This is particularly likely if several generations in your family have been affected, for example one of your parents, and one of your grandparents. If a gene change of this type is identified in this research you will have the option of having an NHS gene test to confirm the result. We would then recommend discussing the results with a genetics health care professional who can help to explain the implications and would be able to speak with other family members if needed. We are also happy to discuss this with you and/or your family and doctors.

Although related to a different condition, you may like to read this web-page.

Please note, we do not include children under the age of 18 years in the Parkinson’s Families Project.

No and we will not directly contact any of your family members unless you ask us to.

We are interested in family members joining, whether or not they have Parkinson’s disease. This is because certain gene changes may cluster in a family. By looking at several members of a family we can see if that gene change is likely to be involved in the development of the condition. It is particularly useful to study older family members.

You do not have to tell your insurance company that you have taken part in research, nor do you have to tell them results of genetic tests. However, if they ask, you do have to tell them about diagnoses, symptoms and treatments you have, whether from NHS or private doctors. They may also ask about your family history of illness.

If you would like to know more we recommend this page from the Genetic Alliance UK website and this page from the Association of British Insurers and this page from the Genomics England

There are 37 study sites across the UK. We are also able to recruit participants remotely.

If you cannot make it to one of the 37 study sites across the UK, you are still able to participate. We can send you the questionnaire packs with a stamped addressed envelope to return them to us. If your GP can arrange for the blood test, we will also send you a pack of everything that is required, including packaging to send the samples to the labs. If they are unable to help with this, we will send you a pack for you to send us a saliva sample.

The chance of there being a genetic variant that is related to your condition is much less likely over the age of 45, and so unless you also have other family member affected we are unable to include you in the study. However, if your first symptoms started before your 46th birthday, then you would still be eligible to participate.

Yes. We would still like you to take part in the study. It may also be useful for an unaffected family member to participate too.

I do not have Parkinson’s but one of my relatives has/had Parkinson’s. Would I be able to join in?

We need to recruit the person who has been affected by Parkinson’s first, and they have to meet the eligibility criteria. If they cannot or are unwilling to participate unfortunately you would not be able to join in.