Taking part in research

We need research for a number of different reasons:

Developing treatments

We need to find the best treatment for different types of arthritis and to make sure they’re safe.

开发新测试

By monitoring the development of rheumatic conditions we can improve the ways of measuring how they affect people and the results of any treatment. This might be done in a number of ways, from creating new blood tests to asking patients to complete questionnaires about their condition and medication.

Providing care

我们必须确保提供护理的方法是所有参与人员的最佳选择。例如，我们可以找出医生需要看到患者的频率，这告诉我们他们的治疗是否有效，或者哪些疗法可以帮助人们缓解症状。

Finding out causes

We need to find out what causes the different types of rheumatic conditions so we can try to develop ways to control, cure or even prevent them in the future.

It’s mostly because of research that we’ve been able to improve the care of people with arthritis. We need to continue with research if we want to learn more about different conditions.

研究can be carried out by many different people, but generally researchers are the doctors and healthcare professionals who treat you.

Volunteers can get involved at different stages of research and can do a variety of things to help. You might even be able to conduct your own research if you’re involved in an organisation that has links to the medical community; for example a support group might be asked to conduct research that involves sending out a questionnaire to their members.

研究在哪里完成？

许多研究将在当地的卫生中心进行，但是一些研究将基于医院，大学，研究中心和其他地方。有些人通过电话采访或书面问卷从自己的家中参与研究。

在进行任何研究之前，研究人员需要找出当前知识的差距并发展新想法。他们提出了一个研究问题（假设），然后制定一个研究计划（协议）来试图回答它。进行研究有许多不同的方法，但是如果您参与任何研究，则可能是其中一种：

An observational study of an illness

在一项观察性研究中，研究人员在一段时间内评估参与者（研究的人）及其状况，这有助于探索疾病的自然过程。

该方法可以用来测试理论，例如疲倦是否与一个人的运动数量有关。可以使用测试将疲劳水平与数小时的锻炼进行比较，以查看它们是否链接。

比较两种治疗的试验

试验用于测试新治疗是否有效。这是通过比较一群正在接受新治疗的人与接受标准治疗（对照组）的人（对照组）进行比较的。在一项随机对照试验（RCT）中，参与者被随机放入一个小组中。

Because personal beliefs about which drug a participant is taking might affect the results, the tablets or injections for both groups will look the same, and neither the participant nor the researcher will know which group individuals are in until after the trial is over. This process is called blinding.

Qualitative research into patient experiences

定性研究发现人们如何应对特定状况。例如，可能会对参与者讨论他们的疲倦或痛苦经历。他们的评论将被记录下来，研究中所有访谈中的每个单词和短语都将被研究以查看共同的想法是什么。可能会要求参与者自己或在一小部分人中进行面试。

Many people think that being involved in research means taking part in a study as a participant. Obviously this is a very important role, but there are many other things that you can do depending on what you’re interested in and what skills you have. You don’t need particular qualifications for many of the roles mentioned here but training may be available if it’s needed for your role. You may be offered interview skills training, for example.

这些只是您在研究的不同阶段可以做的事情的一些例子：

除非合适的人志愿服务，否则无法进行新的研究。您的医生，研究人员或您的当地社会服务可能直接与您联系，要求您帮助他们，但您不必等待就可以接触。

您可以通过多种不同的方式参与研究：beplay广告

• 联系您的医生或rheumatology team- 他们可能需要人们进行自己的研究，或者可以为您提供寻找志愿服务机会的建议。
• 与您当地医院的道德委员会交谈，以了解他们是否正在招募成员。
• 成为支持小组或组织的成员。一些较大的患者支持小组训练他们的成员进行自己的研究，许多慈善机构需要人们坐在研究委员会中。研究人员还可以接触支持小组，以找到想要参与其项目的人。beplay广告
• 回复招募人员的本地或国家广告。
• Contact organisations that commission research. If they don’t have anything available, you can leave your details so they can contact you in the future.
• 访问研究人员支持公众参与医学研究。

Before you join a research project, there are a number of things you should find out. The researcher should answer any questions you have, and you can talk to your friends, family and doctor if you have any concerns. Occasionally you’ll be asked to keep information about the study privatel because it might have an effect on the results. The researcher will tell you if that’s the case.

如果您作为参与者参与其中，研究人员将为您提供包含研究的所有细节的信息表。无论您扮演什么角色，找出以下相关问题的答案可能很有用：

• What’s the purpose of the study?
• Why am I suitable?
• 我会被要求做什么？
• Are there any benefits or risks in taking part?
• 如果出现问题怎么办？我保证了吗？
• What happens at the end of the study?
• Will anyone be told I’m taking part?
• Who’s organising the study?

Before you take part in the research, you’ll be asked to sign a form to say that you’ve understood what the research involves and that you’re happy to take part. This is called giving your informed consent.

It’s important to find out how long the study will last so you can see how much commitment you'll need to give. Some studies take place over one session, while others can stretch over a number of years and might involve many visits to the test centre or your doctor. You should also find out if you’ll have to travel and if your expenses will be covered.

大多数研究项目经过独立小组的科学审查。在NHS中进行的所有研究还必须遵循研究Governance Framework for Health and Social Care(PDF, 218 KB), which make sure that the project is safe, ethical and of a high quality.

Once the scientific review has taken place, the researchers have to apply for funding. Another independent review is carried out by the organisation awarding the money. All of these have high criteria that must be met before the organisation will agree to fund projects, and there’s a lot of competition – only the best-designed studies are funded.

无论您参与什么研究，都应该对自己的角色感到高兴和自信。如果您确实有任何问题，那么您应该有一个能够为您提供帮助的人，例如，如果您生病并且无法参加活动。一些研究有导师，一个在您的角色经验并可以为您提供建议和支持的人。

If you’re a participant, you can find out if the study has been approved by an ethics committee. It’s their job to look after your rights and well-being. The ethics committee will look at the information you’ll be given and check that it contains all the information you’ll need to make a decision about taking part in the research. It’ll make sure that the information is presented in a fair and balanced way. NHS research projects can't start without this approval.

If you decide you don’t want to be involved in a particular study, you don’t have to take part. Whether you were approached or you volunteered yourself, you can choose to leave the project at any point. No one will be offended, and you don’t have to give a reason. It won’t affect your normal care and it doesn’t mean that you can’t take part in research in future. You might find that you would prefer to be involved in other areas in research.

对于许多人来说，参与研究的主要原因是找到有关其状况的更多信息。无论研究是否成功，您都会为该主题提供知识，这可能导致更好的治疗。参与研究还有其他优势。

如果您是参与者：

• 您可能会得到更有效的治疗
• 您的病情可能会更密切
• 有关您以及您的病情影响您的更多信息，您的医生将来可以更轻松地调整您的治疗
• you may meet other people with the same condition.

If you’re involved in other areas:

• 您可以通过改善他们将获得的护理来帮助未来发展状况的人们
• 您可能会收到在生活其他领域可能有用的培训
• it gives you the chance to give something back to society
• 您可以将研究引导到您认为最重要的领域
• you might be able to give support to others with the same condition.

While research is intended to find out new knowledge and develop better treatments, there can be disadvantages to taking part:

• 如果您正在接受治疗试验，则可能会遇到一些意外的副作用。
• 该治疗可能没有比目前的治疗更好，也可能没有那么有效。
• 您无法确定会发生什么。
• 您可能不喜欢自己的角色。
• You may need to take more blood tests or have more hospital visits than normal.
• You might find that more commitment is needed than you expected.

研究人员已经很可能会了解结果可能是什么，并且将尽一切可能确保您的安全。如果您参与了治疗试验，并且有任何迹象表明它可能不安全，则该试验将立即停止。

If you do have a negative experience, don’t let it put you off in the future. There are many different things you can do, and sometimes telling a researcher about a negative experience can help to improve the way they conduct their studies and the experiences for the next people they work with.

If you’ve only been involved in part of a project, there can be a long wait until the findings become available. If the researchers don’t automatically offer you the results, you can ask for them.

If you’ve been part of a drug trial and the new drug was more successful than the existing one, it doesn’t necessarily mean that it’ll be available straight away. The new treatment may need to undergo further tests, and it must then be licensed, meaning that the Medicines and Healthcare Products Regulatory Agency (MHRA) or the European Medicines Evaluation Agency (EMEA) allows the manufacturer to market the drug in the UK. After that, it must be approved by a national body such as the National Institute for Health and Clinical Excellence (NICE). Your doctor will be able to give you more information about when the drug may be available.

Versus Arthritis support much of the research into arthritis and related conditions in the UK. As well as directly funding research projects, we fund researchers in hospitals and universities. We also promote education for health professionals and patients. You can find out more about the projects we fund on our research pages.

beplay体育怎么下载与关节炎与符合最高标准的研究人员的合作。预计他们将遵循NHS发布的所有准则，并且必须在国际期刊上报告他们的发现，以便医学界可以共享新知识。

beplay体育怎么下载与关节炎目前还在资助一项研究，以找出在临床试验中是否将干血点用于血液检查。如果这种血液储存方法起作用，它可能会大大增加招募研究的患者数量以及能够参加临床试验的医生数量。

以下组织还可以为参与研究的信息和建议提供帮助：

詹姆斯·林德联盟
Phone: 023 8059 5489
www.jla.nihr.ac.uk/

国家健康研究所（NIHR）
电子邮件：enquiries@nihr.ac.uk
www.nihr.ac.uk

NHS选择
www.nhs.uk/

研究人员(part of INVOLVE)
www.peopleinresearch.org.uk

英国临床研究网络
www.ukcrc.org

英国科克伦中心
电话：01865 516 300
www.ukcc.cochrane.org