This year, AFCM iGEM organized and hosted an Egyptian meetup, to promote collaboration by sharing their projects, and giving and receiving feedback; there were also possible future iGEMers in the meetup who had great potential for the competition and synthetic biology as a whole.

The event took place on June 20th at the AFCM hospital with the CU and AUC iGEM teams in attendance. Besides, the meetup was open to anyone interested in the synthetic biology field and iGEM competition.

The Agenda of the meetup was available for everyone to check before it started, and it was shared online a couple of days before the meetup.

We kicked off by doing an ice-breaking game that pretty much smoothed the atmosphere. Later on, the iGEM ambassadors gave a detailed presentation about the core idea of “iGEM’ with a greater emphasis on the iGEM community overall. Of course, it’s not all butterflies and rainbows. There were limitless encounters that we had to go through on our long journey. However, these obstacles helped us gather immense experience that we are delighted to share with our respectable audience.

Consequently, each team shared their project ideas and their valuable information for this year followed by a Q & A session and feedback which was very beneficial and gave us positive suggestions to improve our projects. Unfortunately, a newly assembled team, team AUC Egypt, faced many hurdles; we managed to help them overcome most of the challenges. However, the one challenge we could not help with was their facing financial issues, and that was the main reason behind them not participating in this year’s competition, even though they had a team and an idea ready to be applied for this year.

Later on, we had a lunch break, which was another splendid chance to socialize and keep those motives high.

For us, a presentation alone is a ‘dull’ thing, so we had to get our grips on something. An elaborate step-by-step synbio course on how to make a genetic circuit from A to Z was elicited to the audience. Followed by workshops where the whole participants were split into groups to apply the course by making a complete genetic circuit by themselves. Also, the course will be available soon for anyone who wants to apply and get to know more about it.

In addition to the collaboration with team Mexico City, we presented their project idea for this year and their journey through their project. All the audience was amused by the outstanding achievements of the team and how hard workers they are.

This was concluded by a video conference with the team in which they explained their idea in brief and welcomed all the audience.

lastly, we were lucky that we got the chance of hosting Dr. Mohamed Elhadidy to give us a lecture about the galaxy website and a tutorial on how to use it in the detection of genetic mutations among variants. It was beneficial for us and we appreciated this chance of getting lectured by him on this day.

At the end of the day, everyone got to participate in this day got an accredited certificate that they took the synbio course from our college, AFCM‌. Moreover, we were fortunate to share our ideas and scientific skills with the other teams and to hear from them wishing brilliant achievements for all of us.

AFCM-Egypt's iGEM team had the pleasure of visiting one of the most influential and respected children's hospitals in Egypt, El Galaa Hospital. El Galaa Hospital is located within the heart of Cairo and is considered one of the best hospitals as its staff has the best doctors and experts in Egypt, especially in pediatrics.

Our visit to El Galaa was helpful as we saw how challenging the process of diagnosing genetic errors of metabolism is. After our visit to El Galaa, we gained a deeper insight into the prevalence and the main issues faced by patients and treating physicians. Our main aim was to collect information about the prevalence of inborn errors of metabolism diseases so we started an open discussion with doctors and distributed surveys among them.

We mentioned that we are working on a tool to detect genetic errors of metabolic diseases. The idea was well received as most doctors addressed that the main issue in newborns is early detection as it is the main indicator of the prognosis of the diseases. Additionally, after receiving the surveys and reviewing the hospital records, we determined that the predominant genetic error of metabolism disease was phenylketonuria. So, we took the plunge and started looking further. We found out that the most serious cases were children who were not recognized in their first years of life

We spoke to the doctors and they advised that if the affected person is caught at an early stage, the risk can be minimized by following a special phenylalanine protein-free dietary plan and the person can live his life normally. Although it seems simple, the real problem is that the screening tool that exists today is not that accurate. Moreover, because of its high cost, it is not available to all people. The second problem is the difficulty of the affected person to stick to the dietary plan.

Ghamra Military Hospital is one of the oldest Obstetrics and Gynecology hospitals in Cairo, Egypt. Our team visited it to distribute surveys, check the current knowledge of the public about inborn errors of metabolism, specifically Phenylketonuria, and test out their acceptance of a novel diagnostic tool for their newborns rather than the conventional heel prick testing.

We started by splitting our team members into the different floors of the hospital to get in touch with the largest possible number of people. Our first step handing out surveys to the public. The surveys were in two languages: English and Arabic. They included questions about the incidence of metabolic disorders in their families, theur current knowledge level about causes of inborn errors of metabolism, and management of these disorders. We collected 300 responses in 2 hours and decided to stop the surveys and move to the next step.

Next, the team members had face-to-face interviews with people, to have better insight into their thinking and concerns. Most of the interviewees were females, which meant that they were either future mothers or current ones. Most of their fears regarded the causes of inborn errors of metabolism and the consequences of late detection or missed diagnosis. As a result, we decided to take an extra step and arranged awareness lectures for them and addressed every concern they mentioned in the interviews. We also taught them about risks of inborn errors of metabolism, the importance of early diagnosis of such disorder, methods of management and follow up, and all the possible complications of most of the metabolic disorder. We mainly focused on phenylketonuria, as it is the disease we are working on for a prototype for our diagnostic tool. Lastly, we had a general discussion with open questions and answers. We also distributed handouts with a summary of the lectures for them to refer to when needed.

Phenylketonuria is an inherited disorder that increases the levels of phenylalanine in blood. If phenylalanine built up in the body of those who have that specific disorder into inappropriate levels, it can cause intellectual disability and may cause other serious health problems.

It is known that such disease is prevalent in Egypt but we had to find out what exactly how familiar the mothers were with such a disease:

We gave it a lot of thought about where shall we conduct our questionnaire at the beginning; the first place that came to our mind was hospitald, hence we organized a visit to the hospital with our national ministry of health. We distributed the survey to the parents and the pregnant females in both the pediatric and obstetrics wards.
We found that the majority of the respondent's gender turned out to be females:

We then asked them about their marital status: It turned out that more than 85% of those who took part in filling the survey were married.

We thought that the number of children may be an indication of how familiar they could be with the potential diseases their children might suffer from:

We started by asking the most important question, which indicates their level of awareness about this specific disease which is "Have you ever heard about inborn errors of metabolism that might affect your offspring?"

To our surprise, we found out that the majority of our respondents either had no clue or have never heard of the disease, the others may have heard the name but were not sure about the symptoms or any of the specific details about phenylketonuria.

It turned out that the minority of those who took part in our questionnaire are those who are acquainted with this particular error of metabolism.

Then we started explaining what exactly is phenylketonuria and the dangerous consequences it conveys to the offspring, that is why you should always make sure that your child is free from such disorder. Because early diagnosis will enable you to help your child and give you sufficient time to understand more about the disorder; in addition to taking the necessary precautions to save your child from the harmful intellectual disabilities that he or she may suffer from.

However, we were surprised to find out that only a few understand what exactly phenylketonuria is. The amazement was because phenylketonuria is prevalent in Egypt with a rate of 1 in every 5000 live births which is more than any of the neighboring African or Middle Eastern countries.
So we decided to inquire about what they thought might be the cause of such disease:

The results are as follows:
The preponderance of results suggests that people do actually know what an inborn error of metabolism stands for and the major risk factor behind it since the greater share of the respondents picked up genes and consanguinity as their answer of choice.

The level of their knowledge about PKU wasn’t extensive as we thought, even for those who knew about the disease were clearly evident to know so little about the correct food regimen and the ways to manage such defect. It needs the parents to do some research about the defect. The answers chiefly revolved around 2 to 3 out of 5 indicating that is yet a lot of awareness to be done about the inborn errors of metabolism as a whole.

So we asked them a simple question "when do you think is the best time for the diagnosis of PKU?"
On the contrary to the previous questions, most of them answered erroneously

Most of the people were torn between choosing while the mother is pregnant or at birth of the child but most ended up choosing the incorrect answer of ‘’during pregnancy’’ while it isn’t completely wrong. But since it such an invasive technique to be used while pregnancy the common method is by diagnosing the child in the first 48 hours after delivery.

Do you think that PKU can shorten your life span?
Most of those who took the survey either chose yes or maybe while the answer is NO less than 25% got the answer accurate. The truth is that while PKU is toxic to the nervous system. Without treatment, PKU can cause intellectual disabilities but PKU does not shorten life expectancy, either with or without treatment.

People didn’t know that for some individuals eating even the normal portions of protein as another healthy adult may severely affect their mental cognition. The problem here rely on that most of PKU patients does live in agony because of such deprivation. Because if you just think about it. Can you remember how many times have you tried to stick to a diet and eventually failed? Not only that but how many times did it take you to finally confine to a diet? And how long did you keep on yourself from any food that you do crave such as an appetizing hamburger or a delicious hot dog?

THence we asked the respondents "Do you think you can stop your child from consuming fast food?"

More than 90% of the answers came in 1 out of 5, so if you think you can't force him to neglect any food that contains protein in his or hers childhood years what makes you think that will be able to influence him or her in adolescence or adulthood.

Even the parents admit that if they do have an allergic child, they wouldn’t be able to abstain that child from those allergens completely especially outside of the house, they give an average of 3 out of 5 in capability to prevent. So what if with every bite he or she takes it may take a part of the intellectual capability that he or she possess, so do you think that you will be able to raise such a child with such responsibility.

We asked them"How tough do you think is it to raise a child with intellectual disability?"

The answer was that almost all of them responded by that it would be extremely difficult giving it between 4 and 5 out of 5 on the difficulty scale.

In what countries do you think PKU is prevalent? Actually most answered correctly and said that since it is an autosomal recessive disorder hence it is present all over the world.

The answer that got the full exact response was to the question"If a simple screening test can save an infant from further developing mental retardation. Would it be his right to have such a screening test?"

Every one assured that if a single test can save the mental ability of such a child then it is a must that he receives it once he is born.

That is why we introduced our device which can detect phenylketonuria with a fraction of the cost, designed especially to solve this specific problem in the developing countries, as a way to ensure that every child gets the opportunity to have normal functioning brain and to be a productive member in the community.

We wanted to know if the respondents to this questionnaire can figure out what is the main reason for the inborn screening not reaching a global scale to include all the various errors of metabolism, they seemed to understand why? Both the poverty and cost are the main reasons for such delay in the spread of the screening to all nations since it is found that the more developed a country the more the errors of metabolism it screens for. Therefore, we designed our diagnostic tool to be more cost effective in order to be used in more of the developing countries as well as the developed ones especially because of the lack of funding in the medical field department in the African continent.

When we asked them about the treatment options, most of them didn’t know what exactly the screening options were but some of them said that if their child was diagnosed they would pay as much as they can to alleviate such a condition.

Here we explained to them that the only available regimen that could prevent their newborn from deteriorating is a healthy diet. It is simple and anyone can afford it. However, it does need commitment from both the parents and the child suffering from such disorder.

So we asked them that exact question Can they give up consuming protein (No dairy products nor meat nor chicken for life)

More than 80% of participants admitted that they would find it difficult to stop consuming their everyday meals once and for all.

After we explained to them about PKU and the harmful effects it inflicts upon the offspring, we asked them a very simple question which is Do you think a parent is putting his child in jeopardy when he sneaks a snack from time to time in his child regimen?

Considering that some people think it is alright to give you children a piece of cheeseburger from time to time. The results are as follows:

The response to such question raised great concern, thus we the AFCM iGEM took the responsibility of producing a set of recipes that each parent of a newly diagnosed child shall acquire in order to reach the desired function of introducing the parent towards the possible harmful effect of such action on his offspring as well as giving him examples of the food that is both tasty and will cause no harm to the child, as well as the formulas used for the newborn.

We distributed such (O pro menu) as in nearly devoid of protein over 50 of the pediatric clinics (specialized in treating inborn errors of metabolism) in the areas of Cairo and Giza and we conducted an agreement with 6 hospitals to include this set of menu to raise awareness as the hospital is the first place that a parent goes to, looking for answers on how to preserve his offspring secure and protected.

Now that PKU has been determined, what comes next?

From a clinical standpoint, we needed to understand more about the illness itself.

Here, we asked our neighbourhood physicians to provide us with more information about the prevalence of that particular ailment in hospitals and their recommendations for how to best improve the conditions of those who have the disorder.

The majority of respondents to our poll had professional experience of at least five years, and some had been in practise for almost twenty years.

We therefore asked them if they believed that, specifically for this ailment, the diagnosis was more crucial than the treatment.

Most of those paediatricians emphasised screening above treatment since, in their opinion, if a child is correctly diagnosed at birth, he can live a long, healthy life with strong cognitive function as long as he follows the food plan that has been specifically prescribed for him.

When we inquired of them, "Have you ever seen a case that hasn't been diagnosed owing to hospital malpractice?" they responded that they had. This is another reason why they believed in the significance of the screening accuracy.

More than 80% of the paediatricians who responded to our question said "yes," showing that the severity of the harm experienced by children with that disorder varies depending on the age at which their parents believed that their child's condition was getting bad enough to warrant going to the doctor. With such a sickness, the main challenge is that the harm already done cannot be undone; only further progression can be stopped.

"Do you know the current statistics regarding the present national prevalence of the disease?" We enquired of them.

We decided to ask Dr. Otef after they claimed not to be aware of its actual prevalence in Egypt.

Surprisingly, the response never went over 3 out of 5, which was a huge warning for us to spread awareness about this condition and the consequences of not adhering to the diet. Even though parents are aware that their children shouldn't consume protein-containing products, some of them still feel that it is okay to occasionally give their children whatever they want as a form of reward. However, they are unaware that this practise has irreversible negative effects, and their child will experience mental disabilities if they come to believe the same way or if they start eating that particular food at a young age.

Therefore, when we asked them if it would be advantageous for the community to raise suitable awareness for PKU among parents and pregnant women who have the condition, all of their responses supported the notion.

On a scale of one to five, we needed to know how effective the present PKU preventive and diagnosis techniques are.

Although the screening techniques are excellent, the answers were. However, they do come across a lot of situations where the children are not identified as having a mental handicap or a delayed mental ability in comparison to their classmates who are the same age because of a number of false negatives.

As a result, we made the decision to increase both the specificity and sensitivity in order to ensure that no child would ever again be overlooked due to a flaw in the screening process or instrument.

Before beginning our mission to identify PKU and spread knowledge of it so that every parent would take excellent care of their children in the future, we had to ask the final question. We questioned the paediatricians, "Do you believe that adhering to a tight diet is enough to safeguard a PKU patient's mental development?"

The paediatricians informed us that, based on their observations, a person with such a disease would likely be able to do great things in life and keep his mental capacity provided he adheres to the diet that has been given.