Alopecia UK has recently advertised for participants for a number of different research studies which are taking place in different areas of the UK. Alopecia UK’s Charity Manager, Jen Chambers, and Communications Manager, Amy Johnson, have both noted this pleasant realisation and believe it to be a very positive step in the right direction.
Jen says, “It’s fantastic that so many research study opportunities have recently arisen. It’s great to know that alopecia is an area that people are looking at. Alopecia, of all types, has been under-researched for many years and there is still a long way to go but it’s encouraging to see these studies coming through. Hopefully we'll see many more once the results of the Hair Loss Priority Setting Partnership, that we've been involved with this year, get finalised and released.”
Amy adds, “Although Alopecia UK, being the small charity it is, cannot currently afford to directly fund research it does play an important role in recruiting participants for research studies. We are eager to assist researchers in their work and are keen to advertise research opportunities to our members.”
They both go on to write...
So is there a change and if so what is sparking this change? It is difficult to say whether there is a definite change and we can only comment on observations. There have been various studies over the years in the UK but they have been quite sparse and fairly non-sequential. To see so many featured at one time is really encouraging. There could be various reasons for this but we’ve also wondered about the involvement of Alopecia UK and in what way the charity might have helped. There have been big changes to the charity over the last couple of years, with more and more members of the alopecia community getting behind it to help it grow to the organisation it needs to be.
Could it be something as simple as the charity finally starting to have the resource it needs to pick up and support these studies? Under a solely voluntary resource the charity often struggled to pick up and respond to all emails. Now with staff resource we are able to not just pick up research enquiries but also follow them up, shout about them and recruit participants. It can be difficult to access and recruit people with alopecia. It is why Alopecia UK supporting research in this way is so important.
Similarly the work we do around raising awareness to medical professionals and researchers. Has that helped? Getting across the importance of hair and the devastating impact it can have can motivate and inspire people to choose alopecia as their research topic. For example our Chair of Trustees, Jackie Tomlinson, delivered talks at the World Congress for Hair Research in Edinburgh in 2013, both of which were well received with her receiving many compliments afterwards of how eye opening the talks were. We have since noticed people who were at this conference get in touch about various projects, including some of the current research studies.
Providing support to those with alopecia, could this help? Traditionally alopecia was not something that was talked about. We have more and more people coming forward and talking about their alopecia, taking part in media and large scale awareness events, reaching out and finding each other, building friendships and valuable support networks and helping people to realise that they are not alone. Strength in numbers is very important. This then has a snowball effect with the result being a more open attitude towards alopecia, a feeling that it’s a bit easier to talk about it. For those who are studying at university themselves they may then feel more able to choose alopecia as their own research topic. More undergraduate and postgraduate studies, the new generations coming through, are going to help towards further research opportunities.
We can’t take credit for any of these research studies. But we’d like to think that Alopecia UK has helped and we wanted to show you how things are all connected. How the aims of Alopecia UK and the work it carries out all help to push forward the progression of services and research for alopecia. This is why it is so important that we have a strong organisation working on behalf of those with alopecia, and why it is worthwhile for those affected by alopecia to invest in the organisation, and join forces to help it continue to grow, achieve and evolve.
There are currently 5 research studies recruiting participants that Alopecia UK have been made aware of. Click on the links below for full details.
Alopecia Areata - 'Are emotions important to the psychological effects of alopecia areata?'
Scarring Alopecias - 'Why are hair follicles damaged in scarring alopecia?'
SKINS research project for young people aged 12-24 living with skin conditions
Undergraduate Psychology Study - Young Men and Hair Loss
Alopecia Areata - Botanical Trial