Is anyone involved with a long-term national study?

[TheBitchOfTheVicar]

Listening to a R4 programme, apparently 30,000 people are involved in a shopping survey, scanning all shopping and receipts, to give an idea of the nation's shopping habits. Also there is that 7up survey. And presumably some twins and multiples studies.

Is anyone here involved in one they would like to share? I have nothing to contribute; just being nosey!

My DS is doing Prep too @SimonJT

I’m doing the breast cancer one

I also do the Bio Bank.

I have a specific condition and i take part in research via my local hospital. Anyone can sign up to be part of research, they need healthy people as well. One of the bodies of research had to take swabs from both lower ends, but it gave them new knowledge, which has massively improved people's lives. I'm also featured in medical journals, i had a side effect of something that hadn't been seen in the UK before. The Consultant who asked me if they could take pictures etc was very excited. A lot of his colleagues (who made special visits) had never seen this in person. They asked if i would share my medical information with them long term and I've agreed.

My mum's in Protect and I do the assessments as her informant. She worries about her memory but I'm more worried about her mental health.

We were involved with the baby lab at Birkbeck - they study babies through to 3 who have siblings with autism. They secured funding to study from 6-10 but now on hold I presume

My son is part of a study tracking the treatment and progression of his genetic condition. His information gets sent from each 6 month consultant neurologist appointment. The data will look something like "Boy#8888, 5y7m, [specific genetic mutation], Xmg of [medication] daily, Ymg of [other medication] daily." Then it is all about his North Star score which is a test to measure what he is able to do physically.

I'm taking part in the Breakthrough Generations breast cancer study:

www.breakthroughgenerations.org.uk/about-study

This is the link for the COVID19 study mentioned up thread.
You download the app and record symptoms daily, it takes two seconds.

You can see what the scientists discover as they discover it too. This should really help to advance knowledge.

Help slow the spread of #COVID19 and identify at risk cases sooner by self-reporting your symptoms daily, even if you feel well 🙏🏼. Download the app
covid.joinzoe.com/

@milomonster and @MaidofKent78 (I'm a maid of Kent too!) - how have the data you've collected changed things in your own areas of research?

I do the Kantar shopping one where you scan your shopping and upload receipts. Done it for about ten years now.

Am doing the Covid tracker one too currently. My mum has been in a long term study for a condition she has, in the past and had just started on another study of side effects that she has from the condition.

I'm involved in one about mobile phone usage and impact on health. I get a survey by email every 5 or 10 years.

I have been involved with biobank since 2010

@MaidofKent78 I used the BHPS for my PhD. It’s an amazing study.
@TheBitchOfTheVicar good question. So, I apply techniques to cohort data to understand how disease develops from birth to adulthood. Not all children follow the same trajectory. I identify sub-groups of children who follow a similar pattern over time. For example, 5% of kids will have a particular disease disease throughout life, whereas others will develop it later, others will develop it early in life but recover. I then look at the factors which predict which group a child will belong to. My team are looking at genes which predict membership and we got some very interesting results last week. I’m very interested in developing methods to improve how kids get classified because the more uniform a group is, the more likely it is to get clearer genetic signals. Not all methods classify kids correctly.
Sorry if that was a long and boring explanation but I promise you the work is very useful. I work with incredible clinicians who interpret the results and we publish in world-leading journals.

Dd1 was involved in one through Glagow University and the Dental hospital from a few weeks old. Involved her having lots of pictures taken to look at normal facial growth so they could improve the outcome for children with cleft lips and pallets.

My son is part of a study at Addenbrookes. Signed up when pregnant, it covered all sorts of questions about my background, diet, exercise, smoking, lifestyle before the birth, about the birth itself and any medical treatment afterwards, bf/bottle fed, weaning diet, exercise. Often get updates but no questionnaires recently.

My cats are part of a Bristol Vet School study. I think the kittens were all from rescue and have been followed for seven years. We get sent questionnaires several times each year covering diet, health, behaviour and reports on results found.

Good question @TheBitchOfTheVicar! I've only really started to look at longitudinal data recently.

My area of research at the moment is analysing the impact of having a disability has on income. All the data sources that I've looked at so far are cross-sectional (i.e. each respondent is only sampled once) so whilst we can see the relationship between disability and poverty over time at the population level, we can't see the impact of disability over time for an individual.

This is where longitudinal or panel studies like BHPS/USoc come in. By tracking the same individuals over a period of time, we can see how their income varies over that time period, and how the presence (or not) of a disability affects that, taking other factors such as age and sex into account.

The birth cohort studies will allow me to see if when you were born has an impact: e.g. does the experience of someone born in 1958 vary significantly from someone born in 1970 when we explore the relationship between disability and income.

A lot of work to be done, and there are some big restrictions on the data, but its fascinating nonetheless.

@milomonster and @MaidofKent78 thank you!

I am part of a study into the treatment of Non- Hogkind Lymphoma and why the treatment is successful in some patients but not others. I have been in remission for 9 years after stage 4 NHL and am thankful I was given groundbreaking treatment.

I was a participant in a 30 year follow-up study of the efficacy of the measles vaccination,which was introduced in this country in 1964. I was just over a year old when our family GP asked my mum if she would like me to receive the new vaccination. She jumped at the chance as my two brothers (8 and 5 years older than me) had had it at the same time about 2 years before I was born, and had been very ill with it. The study was run by what was then known as the Public Health Service Laboratoris, and initially,my DM reviewed the pink form once a year asking if I had had measles,and if I hadn't,had I been in contact with anyone who had. This continued until I was 18,at which point they sent the forms to me. When I was 24 and my Dd was 5,she caught measles,even though she had been vaccinated. I didn't know it was measles as she was not very ill at all,just a pink rash and mild fever. The doctor confirmed it was actually measles by the presence of white patches inside her cheeks,or Kopliks Spots. She said it is still possible to catch measles even after being vaccinated,but it would be extremely mild. And significantly,I didn't catch it. So I was finally able to report back that it had worked for me. When I was 30,they sent the pink form, said it was the last one, and thank you for participating in the longest running medical follow up study (so far) in British history.

This thread is fascinating.

I had no idea there were so many long term studies happening.

Thanks for asking the question @TheBitchOfTheVicar

@Backforgood isn't it?

Keep them coming, and thanks for sharing in such detail, everyone!

DD and DS have been part of the Twins Early Development Study since 1996. We had a few trips to London when they were small to take part in research and they have done all sorts of activities and questionnaires over the years.

DH is in a prostate cancer study although he thankfully doesn't have it.

@lakeswimmer @Bananajam fellow bcs70 member here. Are you in the Facebook group?

Like @eliope, my DS19 is part of the Child of the New Millennium Study. He has really enjoyed the doing the tasks and is interested in seeing the data which will come from it in the future. I’ve never met anyone else with a child taking part!