Name the exact document before you ask anyone for it
A rare-disease multidisciplinary team review often stalls not because records are absent, but because nobody has named precisely which record is absent. "My file is incomplete" is not actionable. "The 2023 muscle biopsy pathology report from the neurology department at Hospital X is missing" is actionable. Before you contact anyone, write down the document type, the approximate date, the department or clinician who issued it, and the format you currently hold.
This matters because different missing items have different owners. A discharge summary is usually held by the hospital that admitted the patient. A genetic test report is held by the laboratory that ran it. An imaging disc is held by the radiology department or the patient. A clinic letter may sit with the individual specialist. If you ask the wrong office, you lose days and may receive a polite refusal that has nothing to do with whether the record exists.
For a rare-disease MDT review, the review team needs to understand the diagnostic journey, not just the latest visit. That means the earliest abnormal findings, the sequence of tests, and any treatments already tried. If you cannot list these from memory, that gap itself is useful information: it tells you which records to reconstruct first.
Do not send a complete medical archive at first contact. A short summary of the diagnosis, the main question, and a list of what you hold and what is missing is enough for an initial enquiry. The coordinator can then tell you which specific documents to prioritise.
Who to ask for each type of missing record
Once you have named the document, the next question is who controls it. In most health systems, records are held by the institution that created them, not by the patient and not by a coordinating service. That principle applies whether the record is in your home country or in China.
For a hospital discharge summary or inpatient notes, contact the medical records department of the hospital that provided the care. For an outpatient specialist letter, contact the specialist's office or the clinic's records team. For laboratory results, including genetic or metabolic testing, contact the laboratory directly; the ordering clinician may have a copy but the laboratory holds the definitive report. For imaging, ask the radiology department for the images and the report, because a report alone may not be enough for a review team that wants to look at the images.
If the original clinician has retired, moved, or the hospital has closed, ask the successor institution or the regional health authority where records were transferred. This is slower, but it is still a defined path. Do not assume the record is lost until you have asked the institution that created it.
When you request a record, ask for a legible copy with the patient's full name, date of birth, and the date of the test or visit. Ask whether an English translation is needed, and who is responsible for producing it. Do not ask for a translation before you have the original, because translating an incomplete document wastes effort.
Does the missing record block the next step?
Not necessarily. A missing record can affect the next step in three different ways, and it helps to know which one applies to you.
First, the record may be essential for the review to proceed at all. If the MDT cannot confirm the diagnosis without a specific pathology report or genetic result, the review may be deferred until that document arrives. In that case, the missing record is a genuine blocker, and the priority is to obtain it.
Second, the record may be helpful but not essential. The review team may be able to form a view from the records you already have, while noting that a particular document would strengthen the assessment. In that case, the review can proceed, and the missing record can be added later.
Third, the record may be irrelevant to the specific question you are asking. A rare-disease MDT review is usually focused on a defined decision: confirming a diagnosis, assessing whether a treatment is appropriate, or planning a complex intervention. Records that do not bear on that decision may not need to be chased at all.
The only reliable way to know which situation applies is to ask the review coordinator to confirm with the hospital. Do not decide for yourself that a record is unimportant, and do not assume that every gap must be filled before anything can happen. Ask the specific question: "Given the records I have sent, can the review proceed, and if not, which exact document is required?"
How to write the request so you get a usable answer
A vague request produces a vague reply. When you contact a records department, a laboratory, or a specialist's office, use a short structured message. State who you are, the patient's name and date of birth, the exact document you need, the approximate date, and the purpose. Ask for a legible copy and confirm the format: paper, PDF, or disc.
If you are writing in a second language, keep sentences short and avoid medical abbreviations that may not translate. If the office asks why you need the record, you can say it is for a specialist review of the patient's condition. You do not need to explain the entire history in the request.
Keep a simple log of what you requested, from whom, on what date, and what you received. This is not bureaucracy for its own sake. If a record does not arrive, the log tells you exactly whom to follow up with and when. It also prevents you from requesting the same document twice from two different offices.
When you send records to a review coordinator, send them in the order that tells the story: earliest relevant test first, then the sequence of investigations, then the most recent assessment. A folder of unlabelled scans is far less useful than a short index that says what each file is and when it was created.
What the coordinator can and cannot confirm
A coordinator can help you organise records, identify what appears to be missing, and put specific questions to the hospital. A coordinator can request a specialist appointment or a multidisciplinary review on your behalf, and can explain what the hospital has asked for.
A coordinator cannot decide whether your file is clinically sufficient, cannot confirm that the hospital will accept you for treatment, and cannot guarantee that a particular specialist will be available. Those decisions belong to the treating hospital and its clinicians. If you receive a preliminary reply that says more information is needed, that is not a rejection. It is a request for a specific document, and the correct response is to ask which one.
It also helps to separate two different questions. The first is whether the review can proceed on the records you have. The second is whether the hospital will offer treatment after the review. A positive answer to the first does not guarantee a positive answer to the second. Eligibility review is not the same as confirmed treatment access.
If you are considering a rare-disease MDT review in China, the relevant CSC service is the multidisciplinary review itself, where the scope and fee are agreed before the review begins. An initial enquiry is free and does not require buying a proxy consultation. You can start with a short summary and a list of what you hold and what is missing.
Your next step
Write down the one document you believe is missing, the institution that created it, and the date. Contact that institution directly and request a legible copy with patient identifiers. In parallel, send a short summary to the review coordinator: the working diagnosis, your main question, what you already hold, and the exact document you are trying to obtain. Ask the coordinator to confirm with the hospital whether the review can proceed without it or whether the document is required first.
Do not wait for a complete archive before making that enquiry. A named gap and a clear question are more useful than a large unorganised file. If the hospital says the record is essential, you will know exactly what to chase. If it says the review can proceed, you have saved time. Either way, the next step is a specific request to a specific office, not a general hope that someone will sort it out.
Sources & scope of this guide
References and official service information relevant to this guide.
This is general planning information and has not been individually reviewed by a doctor. Medical decisions and personal treatment advice come from your treating clinicians.