Swedish Research Study! Sign Up Fellow Swedes!

[SwedishSImon]

Hi!

Karolinska Institutet in Stockholm is conducting a study and needs people with tinnitus to apply for it. So far 662 people have signed up. I did so just now.

Here's the page: http://stop.ki.se/

Have a good weekend amigos!

 

[Atlantis]

Hi!

Karolinska Institutet in Stockholm is conducting a study and needs people with tinnitus to apply for it. So far 662 people have signed up. I did so just now.

Here's the page: http://stop.ki.se/

Have a good weekend amigos!

Can you translate for us? What are they studying? How are they studying? What are the trial participants subjected to?

 

[SwedishSImon]

Yes of course, here's a pretty decent google translate of the Swedish description:

STOP - Swedish Tinnitus Outreach Project is a study conducted at Karolinska Institutet about tinnitus. STOP is the largest tinnitus study carried out in Sweden. The goal is to collect new information about tinnitus that can help us to understand the causes of tinnitus, its mechanisms and to improve the diagnostics of more effective treatments. We would like to inform decision-makers about the need to improve tinnitus care in Sweden and provide recommendations and guidelines for tinnitus treatment.

STOP investigate the prevalence of tinnitus in Sweden, its causes and possible genetic origin. To participate in STOP means that you will respond to questions in a questionnaire. Depending on the different responses in the questionnaire, a number of individuals with and without tinnitus will be selected for a visit to a STOP center to provide a saliva sample, various ear measurements and evaluation of possible tinnitus with a new and simple diagnostic method.

Whether you have tinnitus or not, will your participation to help prevent tinnitus and better care for tinnitus patients.​

This seems to be a well organized study, conducted by one of the most prestigious medical institutes in Sweden (I would say THE most prestigious). In classic Swedish manner it will take time and as with all science, the outcome will be discussed back and forth. But it's a great initiative; for us tinnitus sufferers to get some answers and for the society to raise awareness about tinnitus.

Stay classy, wear your earplugs.
Simon

 

[RaZaH]

I am kind of pissed at Karolinska for not stopping Antinitus for using their name .

 

[ady]

I am kind of pissed at Karolinska for not stopping Antinitus for using their name .

Antinitus is also using veterans in their marketing fiction, they spammed my e-mail address earlier

 

[RaZaH]

Hope they burn in hell

 

[Sailboardman]

@RaZaH,

Hell would be to comfortable, for those scumbags! There has to be something worse than Hell? Oh yeah, what am I thinking......give them all tinnitus! }

 

[Aussie Lea]

STOP - Swedish Tinnitus Outreach Project is a study conducted at Karolinska Institutet about tinnitus. STOP is the largest tinnitus study carried out in Sweden. The goal is to collect new information about tinnitus that can help us to understand the causes of tinnitus, its mechanisms and to improve the diagnostics of more effective treatments. We would like to inform decision-makers about the need to improve tinnitus care in Sweden and provide recommendations and guidelines for tinnitus treatment.

STOP investigate the prevalence of tinnitus in Sweden, its causes and possible genetic origin. To participate in STOP means that you will respond to questions in a questionnaire. Depending on the different responses in the questionnaire, a number of individuals with and without tinnitus will be selected for a visit to a STOP center to provide a saliva sample, various ear measurements and evaluation of possible tinnitus with a new and simple diagnostic method.

Am I the only one or does this study sound akin to something that should have been done 10-20 years ago?

 

[SwedishSImon]

I am kind of pissed at Karolinska for not stopping Antinitus for using their name .

Yeah I get that but Karolinska is a really good institute and I have hope this could lead to something!

 

[SwedishSImon]

Am I the only one or does this study sound akin to something that should have been done 10-20 years ago?

I know, feels like this is the kind of research that could find something really useful. Or they won't find jack shit, time will tell

 

[kristinsj]

i signed up yesterday, but all information in the email you receive is in swedish... might be nice to know before signing up. good for us scandinavians anyway....

 

[Markku]

i signed up yesterday, but all information in the email you receive is in swedish... might be nice to know before signing up. good for us scandinavians anyway....

Well, the whole site is in Swedish, so at least I wouldn't expect English information coming in emails

 

[starlite]

Well this is just a study, Nothing else.
Like filling a form if you have tinnitus or not, I wass hoping for a drug or something.

 

[Samir]

I found out about this study today by reading an article in Dagens Hälsa. I have just signed up! I don't know exactly what to expect but anything that can help push tinnitus research forward is very much welcome.

As of 5 October 2016, the tinnitus group consists of 2530 individuals, and the control group consists of 2529.

For how long will this study go on? For how long will they keep the registration open? When can we expect to see the first results?

 

[SwedishSImon]

I found out about this study today by reading an article in Dagens Hälsa. I have just signed up! I don't know exactly what to expect but anything that can help push tinnitus research forward is very much welcome.

As of 5 October 2016, the tinnitus group consists of 2530 individuals, and the control group consists of 2529.

For how long will this study go on? For how long will they keep the registration open? When can we expect to see the first results?

Hey Samir,

I dont really know how much longer the registration will be open, but I believe that they'll keep it open for some time, since more applications lead to more reliable science results!

I registered last year in January, and since I completed the survey I havent heard from them.
Anyone here have heard anything from KI?

 

[Samir]

Hey Samir,

I dont really know how much longer the registration will be open, but I believe that they'll keep it open for some time, since more applications lead to more reliable science results!

I registered last year in January, and since I completed the survey I havent heard from them.
Anyone here have heard anything from KI?

Hi Simon!

I have forwarded these questions to KI. I will report back when I get a reply.

Frankly, it's a good thing that they have kept it open thus far. It has allowed me to register myself. Hopefully, even more people will get registered.

It's true that more data usually gives better measurements. So the more people they can recruit for the study, the results will be that much more accurate. But the recruitment seems to go slow.

May I ask how you learned about this study?

I suspect that the audiologists and ENT specialists who know about this study and who can refer people to it are in a minority. The physicians, audiologists and specialists who have the first contact with patients should know more about such studies and current state of research.

You mention you registered in January. When did you get the survey?

I suspect they will not begin processing the collected data and do additional hearing tests until the registration has been closed. Maybe they are awaiting to get a decent number of individuals in the study. What that number is I don't know. Maybe 5000? I don't know. But it may speed up the process if we all share the information about this study to other people. The audiologists and ENT specialists who have contact with tinnitus patients are best suited to spread the word about the study. But I think most of them don't even know this study exists.

I would be most interested in having the in-depth, full spectrum hearing test done at their clinic. I think they are among the handful few in Sweden that have that kind of setup. Most "normal" audiologist and ENT clinics either don't have the equipment or just don't do it.

 

[SwedishSImon]

Hi Simon!

I have forwarded these questions to KI. I will report back when I get a reply.

Frankly, it's a good thing that they have kept it open thus far. It has allowed me to register myself. Hopefully, even more people will get registered.

It's true that more data usually gives better measurements. So the more people they can recruit for the study, the results will be that much more accurate. But the recruitment seems to go slow.

May I ask how you learned about this study?

I suspect that the audiologists and ENT specialists who know about this study and who can refer people to it are in a minority. The physicians, audiologists and specialists who have the first contact with patients should know more about such studies and current state of research.

You mention you registered in January. When did you get the survey?

I suspect they will not begin processing the collected data and do additional hearing tests until the registration has been closed. Maybe they are awaiting to get a decent number of individuals in the study. What that number is I don't know. Maybe 5000? I don't know. But it may speed up the process if we all share the information about this study to other people. The audiologists and ENT specialists who have contact with tinnitus patients are best suited to spread the word about the study. But I think most of them don't even know this study exists.

I would be most interested in having the in-depth, full spectrum hearing test done at their clinic. I think they are among the handful few in Sweden that have that kind of setup. Most "normal" audiologist and ENT clinics either don't have the equipment or just don't do it.

I dont really remember how I found out about it. I think I just googled something and found it!
And I got the survey a couple of weeks later, it was quite some question I remember!

And yes, please write here once you get the response from them! Im also interested in having a in-depth analysis at their clinic!

 

[Samir]

I have received answers on a number of questions regarding the STOP project. I will translated it to English and put it in the form of questions and answers (q & a). Expect to see a couple of edits here as I go through the text.

Q: When was the STOP project started?
A: It was started in 2015. Registration was open since August 2015.

Q: For how long will this project go on?
A: There is no planned end date for the project.

There are many questions about tinnitus that are still unanswered within several areas, including diagnostics, treatment and genetic risk factors. We hope that STOP will help answer as many questions as possible over a long time.

Q: For how long will the registration be open?
A: Since there is no planned end date for the project, the registration will be kept open indefinitely.

In order to get a good overview it's essential that we have as many participants as possible. At the same time, we need many participants in order to be able to study very specific type of tinnitus. This is necessary because tinnitus can take on different forms for different individuals.

Take a group of 1000 individuals with tinnitus for example. In order to do a relevant study it might be necessary to only look closely at men in their 50s with unilateral tinnitus that resulted from a noise damage. These will then need to be matched by gender, age, hearing status and other factors such as stress level against a control group without tinnitus.

With all these criteria, the number of participants that are included in a specific study is reduced rather quickly. It is for this reason that we need a large number of participants to begin with.

The fact that tinnitus can take on many different forms for different individuals has been one of the key factors that has hampered tinnitus research till this day. This makes it very difficult to do well controlled studies.

Q: When do you plan on collecting data of individuals that have applied for the project thus far?
A: We are collecting data more or less continuously, in the form of questionnaires and hearing tests.

Each participant in the project will answer a questionnaire within a month after applying for the study. Unfortunately, not all participants will be invited to do a hearing test right away. But we hope that those individuals will be invited within 2 - 3 months after answering the questionnaire.

In 2016, we have done about 200 hearing tests on individuals that have applied for the study. In 2017, we plan on doing about 500 - 600 hearing tests. We aim to build a well controlled database that we can use to answer specific research questions.

Q: When can we expect to see the first results?
A: The first results derived directly from the STOP study have been published recently in Frontiers where we have validated a number of questionnaires that were used in the STOP project.

Validation of Online Versions of Tinnitus Questionnaires Translated into Swedish:
http://journal.frontiersin.org/article/10.3389/fnagi.2016.00272/full

Those of us working with the project have also contributed to the cooperative research network TINNET which has led to different research publications.

Systematic review of outcome domains and instruments used in clinical trials of tinnitus treatments in adults:
https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-016-1399-9

Genetics of Tinnitus: An Emerging Area for Molecular Diagnosis and Drug Development:
http://journal.frontiersin.org/article/10.3389/fnins.2016.00377/full

 

[SwedishSImon]

I have received answers on a number of questions regarding the STOP project. I will translated it to English and put it in the form of questions and answers (q & a). Expect to see a couple of edits here as I go through the text.

Q: When was the STOP project started?
A: It was started in 2015. Registration was open since August 2015.

Q: For how long will this project go on?
A: There is no planned end date for the project.

There are many questions about tinnitus that are still unanswered within several areas, including diagnostics, treatment and genetic risk factors. We hope that STOP will help answer as many questions as possible over a long time.

Q: For how long will the registration be open?
A: Since there is no planned end date for the project, the registration will be kept open indefinitely.

In order to get a good overview it's essential that we have as many participants as possible. At the same time, we need many participants in order to be able to study very specific type of tinnitus. This is necessary because tinnitus can take on different forms for different individuals.

Take a group of 1000 individuals with tinnitus for example. In order to do a relevant study it might be necessary to only look closely at men in their 50s with unilateral tinnitus that resulted from a noise damage. These will then need to be matched by gender, age, hearing status and other factors such as stress level against a control group without tinnitus.

With all these criteria, the number of participants that are included in a specific study is reduced rather quickly. It is for this reason that we need a large number of participants to begin with.

The fact that tinnitus can take on many different forms for different individuals has been one of the key factors that has hampered tinnitus research till this day. This makes it very difficult to do well controlled studies.

Q: When do you plan on collecting data of individuals that have applied for the project thus far?
A: We are collecting data more or less continuously, in the form of questionnaires and hearing tests.

Each participant in the project will answer a questionnaire within a month after applying for the study. Unfortunately, not all participants will be invited to do a hearing test right away. But we hope that those individuals will be invited within 2 - 3 months after answering the questionnaire.

In 2016, we have done about 200 hearing tests on individuals that have applied for the study. In 2017, we plan on doing about 500 - 600 hearing tests. We aim to build a well controlled database that we can use to answer specific research questions.

Q: When can we expect to see the first results?
A: The first results derived directly from the STOP study have been published recently in Frontiers where we have validated a number of questionnaires that were used in the STOP project.

Validation of Online Versions of Tinnitus Questionnaires Translated into Swedish:
http://journal.frontiersin.org/article/10.3389/fnagi.2016.00272/full

Those of us working with the project have also contributed to the cooperative research network TINNET which has led to different research publications.

Systematic review of outcome domains and instruments used in clinical trials of tinnitus treatments in adults:
https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-016-1399-9

Genetics of Tinnitus: An Emerging Area for Molecular Diagnosis and Drug Development:
http://journal.frontiersin.org/article/10.3389/fnins.2016.00377/full

Thats great information Samir! Thanks!
I will read through the reports in the links and report back

 

[Phendran]

Thanks a bunch for this.
I've signed up. Would be really cool if the study makes a difference.

 

[Samir]

Those of you who participated in the study should have found a follow-up email in your mail boxes. The study organizers are now asking us to submit a new survey that is designed by ESIT specifically. I just did my part. It's only two pages long with about 40 questions.

 

[Raphael7713]

Goooooood