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Ways Finding Research Studies Could Be Made Easier

By Miriam

Recently, I have been searching for research studies that could possibly help me with
some physical health conditions that have gone undiagnosed for years. Searching for research
studies and other resources without a diagnosis is hard in of itself. However, there have been a
few programs I have found hidden within lists of hundreds of other studies the more I searched.
Along the way, there are some things I have noticed about patient registries and websites
containing publicly searchable lists of research studies that I wish would be improved to help
those searching save time and to make the process of finding relevant studies easier.
Websites like clinicaltrials.gov allow people to search for research studies by keywords
or by specific medical conditions. Some patient registries also allow people to search for
research studies by condition while other registries simply have patients fill out a survey and
wait to be contacted by studies the registry matches them with. While it can be useful to search
by a specific medical condition, I also wish these websites had a way to filter out certain
conditions I know I do not have. For example, there seem to be at least hundreds of studies
focused on those who are HIV positive that come up when searching by many different
unrelated keywords and can also come up when I am searching by the names of conditions
besides HIV. Sometimes, a study may be focusing on the subset of patients who have a
condition or symptom I have, but also simultaneously have HIV or some other condition I do not
have. Since I know I am HIV negative from all previous and recent testing, there are a lot of
studies I do not qualify for if they are only looking for those patient subsets who are both HIV
positive and have the conditions I am searching for. Although, as a side note, I am very happy to
see so much HIV research given its early history. There are also a lot of studies focused on
those with cancer or who tested positive for COVID-19, including studies that are looking for
patients who are experiencing multiple specific conditions at once like with the HIV studies. I
wish there was a way to filter out results for studies that include a condition I do not have in the
eligibility requirements, since they clutter the search results with hundreds of listings. Since I
cannot filter them out, I have to carefully read through the search results for the one or two
studies hiding under the same keywords that I do qualify for. Saying that there is only one or two
is not an exaggeration. For multiple keywords, I have searched through the entire results on
clinicaltrials.gov or another website only to find one or two studies that I qualify for and are
relevant to what I am searching for.
With the patient registries that try to match me with studies I might qualify for, they also
need better filters for what studies they send me. These registries already require I fill out
surveys listing some demographic and health information as part of their sign-up process.
However, I continuously get sent studies by some patient registries for demographic information
that does not fit me. More than once, I have been sent studies by the same patient registry
focusing only on people currently in a romantic relationship, especially people who have been in
that relationship for a certain number of months. While I have been in a relationship before, I am
currently single. It would be helpful for the patient registries that keep repeatedly sending me
studies for people currently in a relationship to have a way to filter out these studies in their
matching system. As it is, when one of these registries emails me a study they think might be a
good match, it gives me a multiple choice question to respond back with that includes an option
to say that I do not think I am eligible for the study. I have selected not eligible more than once
for studies they sent for people currently in relationships. Instead of individually responding back
to each study, it would be nice if the matching system could recognize the reason I am not
eligible in order to stop this issue from recurring for the same eligibility criteria. They could
accomplish this by asking for more specific feedback on why I think I am not eligible or adjusting
the information they ask for when originally registering. I have also been sent studies by
registries for conditions I do not have, again pointing to the importance of being able to filter out
conditions instead of only being shown results and matched with studies by the list of conditions
I do have. I was also matched recently with a study focused on people with kids, which is
another demographic detail they could easily build a filter for or ask about in the survey I had to
take when signing up in order to prevent being repeatedly sent studies I do not match the
eligibility for. It defeats the purpose of joining a patient registry and providing my demographic
and health information if I am repeatedly matched with studies I am not eligible for that fall
outside of the information I provided about myself.
While it would save me time to filter out studies I do not qualify for, on the other hand,
there are benefits to being able to view a larger number of study descriptions. Reading through
studies I do not qualify for has at least taught me what types of keywords are commonly used
and which new keywords may be worth trying in future searches. At one point, I searched for all
studies on clinicaltrials.gov that were within a small number of miles from me without entering
any keywords or specific conditions just to get a sense of what is out there and what keywords
the researchers are using in their study descriptions. I also learned more about how
clinicaltrials.gov itself works by playing around with it in this broader way. For example, I noticed
significantly different results were generated if I tried entering the same word in the conditions
box versus the search term box after entering some keywords I commonly saw used in studies.
Doing such a general search helped me generate a list of keywords to use that then led me to
find relevant studies that did not come up with the keywords I had previously tried.
Similarly, it would be helpful if there was a filter to only be shown studies that accept a
self-referral. I came across at least one study for undiagnosed patients and another more
specific to my experiences that both require a letter from a doctor to even apply. While some of
my main health issues remain undiagnosed, there are other diagnoses I already have or
symptoms that I can search for to try to find relevant studies instead of only using the word
“undiagnosed” and similar keywords. Getting a letter from a doctor may seem simple. However,
last month, I wrote about how I have faced many administrative issues when seeking medical
care. Those administrative issues alone create weeks or months long delays in getting
appointments. Alternatively, I could ask a doctor I have already seen if they would be willing to
write the letter by messaging them via patient portals. Although, it has often taken a week or
more to hear back when I have messaged about getting a letter written or other unrelated
matters recently. Additionally, just because I ask does not mean one of my doctors will be willing
to write a referral letter for these research studies. So far, one of the doctors I asked responded
back that they did not think it was appropriate for them to write the letter, since they had not
treated some of what I wanted them to write the letter about. Keep in mind they had treated me
during part of it and they are a doctor I have seen multiple times over the last few years, though
they were still not willing to write it. The issue was not that they thought the study was a bad fit
for me or not worth applying to, because they did suggest I get another doctor to write the letter
instead of them. While this doctor could have gathered the relevant parts of my medical records
and still written the letter, I do understand to an extent where they are coming from. The
problem with them being unwilling to write the letter due to not having completely treated the
issue on their own is no one doctor has individually or continuously managed these
undiagnosed issues. There has been extremely little continuity in my care the last few years. In
primary care alone, I rarely see the same doctor twice. The undiagnosed issues I am trying to
get a doctor to write about to apply for these studies have also spanned years now, going back
to before I aged out of pediatrics. Out of the ones I did not age out of being able to see, some of
the individual doctors who treated me during that time have left to work at a different medical
organization, retired, or have been on vacation recently, making it even harder to find someone
available and willing to write letters for studies that require them in the application process.
One of the studies that requires a letter from a doctor said it was for ethical reasons.
How is requiring a letter to apply for a study with the potential to help undiagnosed patients
more ethical than excluding patients without the resources to get such a letter? I am thankful
enough to not be in medical debt right now and to be accessing care at all, even if it keeps
being delayed by responses taking a week or more and many practices across different
specialties not having available appointments for months when I call to schedule. There have
been plenty of stories in the news lately about how the pandemic has worsened access to
medical care for many people. To me, requiring a letter from a doctor to apply is adding one
more barrier to care that seems unnecessary when other similar studies take self-referrals from
patients. One study wanted a letter from a doctor that included results from certain types of lab
work to determine my eligibility. To lessen the barrier to entry, a study like this could just allow
me to send them a copy of the lab work results myself, since I can easily print them from patient
portals or request the records. While the process of requesting medical records is not always
easy and can take months (especially for older records that have to be pulled out of paper
storage), I have sometimes had an easier time requesting records than trying to get doctors to
write me letters describing those same records. By not allowing me to simply send parts of my
medical records or submit a self-referral, it is creating a gap in care when it comes to accessing
the resources these studies provide. Assuming I eventually do get a letter from a doctor to
submit, it will still have delayed my ability to apply to some studies. Applying for studies is
already often a slow process on its own, regardless of whether they accept self-referrals or
require a letter from a doctor. It takes a lot of time to find studies in the first place, hear back
from the researchers after I call or email, and get through their application and enrollment
process. Out of the studies I have successfully enrolled in previously, it took at least weeks
between first finding the study and when I became fully enrolled, unless it was just a quick
online survey. There are multiple studies that I am still stuck in the application process for after
finding them weeks or months ago, partially due to trying to get letters for some of them and
others just due to slow response times.
Another barrier that I have come across is language barriers when I do not filter only for
studies in the United States. I actually found a few studies in Germany, for example, listed on
clinicaltrials.gov that seem to be more specifically focused on some of the issues I have been
having instead of just broadly focused on undiagnosed patients in general. However, when I
then went on the websites of the organizations running these studies to learn more, their
websites were not in English. Without having someone to translate for me and other resources
to help me navigate the process of possibly applying for a study across borders, I am hesitant to
reach out to studies in countries where I do not speak the language. Even within some of the
studies within the United States, I still need to figure out how I am going to get there for the ones
that offer in-person visits and testing, but are located in other states far away. One study I am
currently in the application process for is almost a thousand miles away while still being in the
United States! That is not even the furthest program I have found for undiagnosed patients
within the United States, though there are also ones I have found much closer to home
comparatively. There are also ones not particularly close by that are willing to work with me
remotely, which helps remove obstacles when it comes to geographic distance.
While I would like to see more filters added to places to search for research studies
online, I have also noticed errors when using the existing filters. For example, I have had times
where I filtered by age only to get some studies in the search results where the eligibility criteria
listed a range older or younger than my age instead of one inclusive of mine. This includes
times where I entered my exact age into the filter, if it was possible to enter an exact age instead
of selecting from a list of ranges only. Additionally, not all the studies I have found for
undiagnosed patients have come up when searching specifically for the word “undiagnosed.”
Some I only found when using other keywords, even if the word undiagnosed could be found in
the page I was then taken to when clicking on that particular search result on Google,
clinicaltrials.gov, or whatever website I was using. I continuously play around with synonyms,
words that describe my symptoms or findings on testing, or more general medical terminology
like “complex patient” to see what comes up in the search results in order to work around that
issue.
It would also be nice if features were added to websites to make it easier to differentiate
between studies I have already read the descriptions for versus ones that I have not viewed yet.
It would be especially possible to build that functionality into the patient registry websites that
contain databases I can search through only while logged in. Since there can be hundreds of
results (if not over a thousand) for certain conditions and keywords, it can be hard to keep track
of which ones I have already read the description for when looking at the search results,
especially when I do additional searches days or weeks after I last looked. A lot of these
websites will have a page listing simply the titles of the studies and possibly also list the
conditions the study is focused on next to the title on that first page. Then, you click on the title
to view more information on the individual study. Sometimes, I have clicked on one I thought I
had not viewed before only to realize I already looked at that study the more I started to read the
page clicking on it takes me to. Not only could the websites I have to log into to search on build
in filters or icons to help me differentiate which studies I have already viewed, but they could
also build in similar functionality for studies that just recently were announced or are new to their
database. One way they could do this is by building something similar to how read versus
unread emails appear for the list of research studies. One site already uses another method,
which is to put a little icon that says “new” next to some of the search results. However, it is
unclear how new is being defined there, with no explanation that I was able to find.
Another thing I have to be careful of when searching on a larger search engine not
specifically focused on research studies, such as Google, is that some of the search results
contain programs that bill insurance instead of research funding paying for any diagnostic
testing or visits. I found at least one clinic that focuses on undiagnosed patients and bills
insurance whose description reads very similarly to some of these studies that do the same
work through research funding and do not charge patients for anything. I also spoke to one
organization that runs both research studies and contains a clinical practice within it that bills
insurance for the same conditions. I always need to make sure to ask if there are any costs I
would be responsible for paying for or if everything is covered by research funding.
Something else I have learned to watch out for is some research studies include clinical
visits or diagnostic testing within the study while others do not, even those focused on the same
types of patients. Some studies that collect samples for genetic or other types of testing will not
share individual results at all with the patients they collected the samples from, instead simply
collecting data to de-identify and make larger discoveries across groups of patients. Other
studies focus more on helping individual patients. One study told me that while they do share
results from testing they conduct, they could only send it to a doctor to then have the doctor
review the findings with me instead of being able to share results with patients directly. It is
important to find out the specific testing and services offered within a particular study and if they
share results with those who enroll or not. When it comes to both studies and medical
departments that offer genetic testing, I have noticed some only offer whole exome sequencing
while others offer whole genome or other testing, with the type of testing included in the study or
offered by the practice not always specified or clear in the descriptions I find online. Clarifying
those details if and when I hear back from researchers is an important part of searching for and
applying for studies. However, it is important to acknowledge there are some studies I contacted
through patient registries or through emails or phone numbers listed on clinicaltrials.gov only to
still not have heard anything back from them weeks later. Following up with another email
sometimes helps, though not always.
While I have found a couple of studies for undiagnosed patients the more hours I have
put into searching over months at this point, there are also a few relevant studies that either
existed for years that I am just finding out about now or found out about too late to participate in.
There seems to be very few resources for undiagnosed patients out there, though there are
things out there. The problem is finding them and finding them in time. For example, the NIH
has been doing a very large study called the Undiagnosed Diseases Network (UDN) for years
now that I only came across recently. It mentions online that their funding is going to run out in a
few months. UDN is the type of study that requires a letter from a doctor to apply, meaning it is
taking even longer to get through their application process than for studies that allow a
self-referral and I have yet to actually submit my application for them mainly due to the barrier of
requiring that letter. They also do not accept a large percentage of applicants. However, the
main issue at this point is unless they somehow get more funding and find a way to extend the
project, it will end soon when their funding ends in a few months. As it is, some of the individual
locations that are part of UDN have already stopped reviewing new applications, although I
noticed one clinical site resumed reviewing them when I checked their website again months
after first finding UDN (which makes the process all the more confusing and stressful).
Meanwhile, they existed for years only to not be on my radar until a few months ago. I was
surprised I did not hear about them sooner, because lately when I search with the word
“undiagnosed” on Google, the results are cluttered with articles and other websites specifically
discussing the Undiagnosed Diseases Network and rarely mentioning other similar studies or
programs. Sometimes, that alone can be an issue where too many of the search results are
talking about this one program and nothing else when I know there are other programs out there
like UDN from having found other programs the more I keep searching. There was also recently
a show on Netflix that focused on helping undiagnosed patients, but I did not hear about this
show until after it was produced. It was recent enough to overlap with when I have been having
the undiagnosed physical health issues that I am now searching for programs that could help
me with. I am not sure I would have wanted to be part of the show or if they would have
accepted me, but it is unfortunate that I did not even come across it back when they were
looking for patients to feature in the show. Since I do not know how that show selected the
undiagnosed patients it helped, it is possible they did not have any publicly accessible
application process. Although, if there had been some way for the public to apply to be selected
for the show (considering many other shows do have ways for the public to apply to be), it is
unfortunate that I did not hear about it at all until after the show was made. It makes me wonder
what else might be out there currently seeking applicants that I just have not heard of yet,
despite actively searching, whether they are research studies, documentaries like the Netflix
show, clinical departments that bill insurance, or other types of programs. I continue to find more
programs for undiagnosed patients the more I search, meaning there is more out there that I did
not immediately find when first searching. There are also new studies continuously announced,
whether relevant or not, which means I need to keep looking at least every once and a while for
ones that just started recruiting. I just know the process could be made easier, between the
programs that have existed for years that I am just finding out about now and the time I spent
looking through hundreds of studies within search results that I did not qualify that could have
been saved if better filters existed. Instead, I kept pushing myself for hours to keep digging in
those same search results for the one or two relevant ones that were hiding among those
hundred I did not qualify for. I am thankful that publicly searchable databases for research
studies and patient registries exist at all to connect patients to relevant studies, though they
have a lot of room for improvement. Making some of the improvements I suggested has the
potential to boost enrollment numbers by helping patients find more relevant studies faster,
improve patient outcomes by more quickly finding studies and other existing resources, and
other positive consequences to implementing them.