参与研究

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

通过监测风湿条件的发展，我们可以改善衡量他们如何影响人和任何治疗结果的方式。从创建新的血液检查到要求患者完成有关其病情和药物的问卷调查，这可能会以多种方式进行。

Providing care

We have to be sure that the ways of providing care are the best for everyone involved. For example, we can find out how often patients need to be seen by a doctor, which tells us if their treatment is working, or what therapies can help people ease their symptoms.

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.

这主要是因为研究我们能够改善关节炎患者的护理。如果我们想了解更多有关不同条件的信息，我们需要继续进行研究。

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.

Where is research done?

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进行研究。

在进行任何研究之前，研究人员需要找出目前的知识差距并发展新想法的地方。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：

疾病的观察性研究

In an observational study, researchers assess participants (people who are the subject of a study) and their condition over a period of time, which helps to explore the natural course of an illness.

该方法可以用来测试理论，例如疲倦是否与一个人的运动量有关。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，可以进行此类研究。

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

Qualitative research finds out how people cope with a certain condition. For example, a participant might be interviewed about their experiences of tiredness or pain. Their comments will be recorded, and every word and phrase from all the interviews in the study will be looked at to see what the common ideas are. Participants might be asked to do the interview on their own or in a small group.

许多人认为参与研究意味着作为参与者参加研究。显然，这是一个非常重要的角色，但是根据您的感兴趣和拥有的技能，您还可以做很多其他事情。对于此处提到的许多角色，您不需要特定的资格，但是如果需要您的角色，则可能可以使用培训。例如，您可能会提供面试技能培训。

这些只是您在研究的不同阶段可以做的一些示例：

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会直接与您联系，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

• Contact your doctor orrheumatology team- 他们可能需要人们进行自己的研究，或者可以向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
• Reply to local or national adverts recruiting people.
• 联系委托研究的组织。如果他们没有任何可用的东西，您可以留下您的详细信息，以便他们将来可以与您联系。
• Visit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.

If you’re involved as a participant, the researcher will give you an information sheet that contains all the details of the study. Whatever role you’re taking on, it might be useful to find out the answer to the relevant questions below:

• What’s the purpose of the study?
• 我为什么合适？
• 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？
• 研究结束时会发生什么？
• 有人会告诉我我参加吗？
• Who’s organising the study?

在进行研究之前，您将要求您签署一种表格，以说您已经了解了研究涉及的内容，并且很乐意参加。这称为给予您知情同意。

重要的是要确定研究将持续多长时间，以便您可以看到需要给予多少承诺。一些研究是在一次会议上进行的，而另一些研究可能会在多年内延伸，并且可能涉及对测试中心或您的医生的多次访问。您还应该找出是否必须旅行，以及是否要支付费用。

Most research projects are scientifically reviewed by an independent panel. All research done in the NHS must also follow the guidelines set out by the研究治理卫生和社会护理框架(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.

Whatever research you take part in, you should feel happy and confident about your role. If you do have any problems, you should have someone who’ll be able to help you, for example if you’re ill and can’t attend an activity. Some studies have mentors, a person who has experience in your role and who can give you advice and support.

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.

For many people, the main reason for being involved in research is to find out more information about their condition. Whether the research is successful or not you’ll have contributed to knowledge on the subject, and this could lead to the development of better treatment. There are other advantages to taking part in research.

If you’re a participant:

• 您可能会得到更有效的治疗
• 您的病情可能会受到更密切的监控
• 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容易定制您的治疗
• 您可能会遇到其他情况相同的人。

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
• you may receive training that can be useful in other areas of your life
• 它使您有机会回馈社会
• 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:

• If you’re on a treatment trial, you might experience some unexpected side-effects.
• The treatment may not work any better than the current one or may not be as effective.
• You can’t be sure of what might happen.
• You might not enjoy the role you have.
• 您可能需要进行更多的血液检查或进行更多的医院就诊。
• You might find that more commitment is needed than you expected.

研究ers are already likely to have an idea of what the outcome might be and will have done everything possible to ensure your safety. If you’re involved in a treatment trial and there are any signs that it may be unsafe, the trial will be stopped immediately.

如果您确实有负面的经历，请不要让它在将来拖延。您可以做很多不同的事情，有时会告诉研究人员负面的经历可以帮助改善他们进行学习的方式以及与他们合作的下一个人的经历。

如果您仅参与项目的一部分，则可能需要长时间等待，直到发现可用。如果研究人员没有自动为您提供结果，则可以要求他们。

如果您参加过药物试验，而新药比现有药物更成功，那并不一定意味着它将立即提供。新的治疗方法可能需要进行进一步的测试，然后必须获得许可，这意味着药物和医疗保健产品监管机构（MHRA）或欧洲药品评估机构（EMEA）允许制造商在英国销售该药物。之后，必须由国家卫生与临床卓越研究所（NICE）等国家机构批准。您的医生将能够为您提供更多有关该药物何时可用的信息。

beplay体育怎么下载与关节炎相对于关节炎支持英国关节炎和相关疾病的大部分研究。除了直接为研究项目提供资金，我们还为医院和大学的研究人员提供资金。我们还为卫生专业人员和患者促进教育。您可以在研究页面上找到有关我们资助的项目的更多信息。

Versus Arthritis work with researchers who meet the highest standards. They’re expected to follow all guidelines issued by the NHS and they must report their findings in international journals so that the medical community can share the new knowledge.

beplay体育怎么下载与关节炎也是目前资金螺栓y to find out whether dried blood spots be used for blood tests in clinical trials. If this blood storage method works it could dramatically increase the number of patients recruited to studies as well as the number of doctors who would be able to participate in clinical trials.

The following organisations can also help with information and advice on taking part in research:

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

国家健康研究所（NIHR）
Email: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

UK Clinical Research Network
www.ukcrc.org

UK Cochrane Centre
Phone: 01865 516 300
www.ukcc.cochrane.org