Participation in studies
Currently there are some studies, that want to find the genes for androgenetic alopecia (hereditary hairloss) and alopecia areata.
It is very important, that everybody, who meets the criteria, participates in these studies.
Only if the responsible genes are found, successful gene therapies will be possible. To participate in the studies, you simply have to do two things:
- send some blood samples to the researchers. The blood samples can be collected by your personal doctor in your home town.
- answer some questions about the history of your hairloss
The criteria of the studies are very similar, so probably you can participate in more than one study.
The more researchers can work with your blood samples, the sooner the genes will be found.
STUDIES in the USA
Study of Dr. Christiano
Dr. Christiano (Columbia University) is looking for the genes, that cause androgenetic alopecia and alopecia areata. She is looking for
- 200 pairs of brothers with androgenetic alopecia (=hereditary hairloss or male pattern baldness).
Both brothers must have a hair state of Norwood VII before the age of 30 and the brothers must have the same parents. Both parents must be alive.
Dr. Christiano needs blood samples of the brothers and of the parents. The blood samples can be taken by the local doctor and then be sent to the Columbia University at no cost.
Additionally a short phone call is necessary. Or you can go the dermatological institute of the Columbia University.
The details of the study can be found at http://www.cumc.columbia.edu/dept/derm/hairloss/
There you will also find an e-mail document to register for the study.
- 200 pairs of sisters wth androgenetic alopecia
- 200 pairs of brothers with alopecia areata
- 200 pairs of sisters with alopecia areata
If you have any questions about the studies, please contact Cathy Donovan by phone
STUDIES in GERMANY:
Study of Dr. Nöthen (University of Düsseldorf/Germany) and Dr. Kruse (University of Bonn/Germany)
Dr. Nöthen and Dr. Kruse are looking for the genes, that cause androgenetic alopecia in men.
They need men, that are younger than 39 years, with very few hair and a brother, that is also affected.
Additionally they are looking for men, that are at least 60 years and still have full hair.
Questions about this study will be answered by
Dr. med. Kruse: Universitäts-Hautklinik Düsseldorf, Moorenstraße 5, 40225 Düsseldorf/Germany
PD Dr. med Markus Nöthen: Institut für Humangenetik der Universitätsklinik Bonn, Wilhelmstraße 31, 53111 Bonn
A consortium of 28 clinics in 15 countries are planning a large scale study
to define general alopecia areata susceptibility and resistance genes in
families of alopecia areata affected individuals.
Alopecia areata probably involves a complex interaction between several
susceptibility and resistance genes plus alopecia areata activating and
inhibiting environmental factors. Several research studies are underway in
the USA and Europe to examine both genetic and environmental modification of
alopecia areata involving human volunteers and laboratory models.
This genetic study will involve a comprehensive, genome-wide screen of DNA
isolated from blood samples provided by donors. Statistical analysis of the
results will provide information on areas of the human genome where genes
involved in AA are located. With this information, and using data from the
recently completed human genome mapping project, candidate genes can later
be defined and examined in detail to evaluate how they may be involved in
This study needs the participation of at least 1120 volunteers in 280 family
groups to ensure reliable results. We need to obtain blood samples from at
least 4 people in a family (Mother and Father and 2 children).
Specific volunteer requirements:
You must have (or have had) alopecia areata and be willing to provide a
You must have a genetically related brother or sister who has (or has had)
alopecia areata and is willing to provide a blood sample.
You and your brother or sister must not be monozygotic twins (identical
It is not necessary for your genetically related mother and father to have
alopecia areata, but they must be willing to each provide a blood sample.
Individuals with trisomy 21 (Down's syndrome) are not able to take part in
the study as the additional chromosome 21 DNA would bias the statistical
You should be resident in Europe, Scandinavia, Taiwan, Australia, or
Singapore. We are currently investigating methods to include individuals
from other geographic regions, but at this time we have no system to collect
blood or data from volunteers located outside Europe, Scandinavia, Taiwan,
Australia, and Singapore.
If you and your family fit the criteria above and you are all willing to
take part in the study, please provide your name and your email or postal
address where we can contact you to the study coordinators via the European
Hair Research Society web site at firstname.lastname@example.org. All emails
will be passed directly and confidentially to the study coordinators. Your
information and email address will not be passed to any third party. Once we
have enough volunteer families, we will contact individuals with details on
how and where to submit blood samples.
If you have further questions please
contact the coordinators at; email@example.com or
The study is coordinated by Philipp University Department of Dermatology,
Marburg, Germany. The genetic screening will be conducted by the
Max-Delbrück-Center for Molecular Medicine (MDC) in Berlin, Germany.
Research funds are provided by the German Medical Research Council.
(Source: http://www.ehrs.org/geneticstudy01.htm )
Acceleration of clinical studies
Before a new drug is available to everybody it is tested in clinical trials. Clinical trials have three phases. In Phase I the drug is tested in some healthy individuals to see, if there are any serious side-effects, that the animal studies didn´t show. In Phase II the efficiency and safety of the drug is tested in some hundred patients. In Phase III the drug is tested in a large number of ill people. If the drug succeeds in the three phases, the maker of the drug asks the FDA or another approval organization to approve the new drug.
As soon as human clinical trials with a baldness gene therapy start, it is important, that a lot of people express their wish, that these studies are done as fast as possible. The German magazine "Focus" reported recently, that cancer patients coordinated themselves in the Internet and made pressure on a pharma firm to accelerate the studies of a new cancer drug. So they were able to hasten the approval process significantly. The drug came to the market 3 years earlier, than expected! The employees of the pharma firm had to do some overtime but this saved the life of many of the cancer patients.
Obviously it is possible to accelerarte the approval process significantly. As soon as clinical trials with baldness gene therapies start, the InFAGen will try to organize similar actions like the cancer patients.